Health Ethics & Bioetical Issues

Bioethical Issues I.

Abortion

II. Artificial Insemination III.

Genetic Engineering and Cloning

IV. Organ and tissue Transplantation V. Surrogate Parenting and Baby Selling

VI. Euthanasia VII. HiV Patients VIII. Child Abuse IX. Issues on Aging X. Bioethics in Research

Abortion means the expulsion of a living fetus the mother’s womb before it is viable. “In medical parlance,” according to Dr. Andre E. Hellegers, “abortion is the termination of pregnancy spontaneously or by induction prior to viability. Thereafter, termination of pregnancy is called delivery.” Types of abortion Spontaneous abortion occurs naturally with no artificial means and the fetus is usually lost in the first trimester. However, a direct cause cannot always be determined. Genetic findings may include the following: chromosomal structure and number are normal in both partners, but abnormal offspring can result sporadically and unpredictably; and one of the parents is in carrier of a balance translocation thus, repeated abortion may result. The most common causes of spontaneous abortion are related to abnormal developments of the embryo or fetus. Make-up, faulty implantation due to abnormalities of the female generative tract, placental abnormalities, chronic maternal diseases, and endocrine imbalance. Most spontaneous abortions appear to be related to imperfections in sperm or ova or to effects of teratogenic drugs. Abortion may also result from uterine fibroid tumors (leiomayoma). Sometimes, abortion occurs in midpregnancy as a result of an incompetent cervix. The weakened cervix is unable to remain closed and painlessly dilates, the membranes rupture, and the products of conception are expelled. This is often the cause of habitual abortion at the second trimester of pregnancy. Endocrine imbalance, particularly a reduction in progesterone and estrogen in early pregnancy, can retard the normal growth of the endometrial lining of the uterus. In later pregnancy, a decrease in Human Chorionic Gonadotrpin (HCG) produced by the placenta can cause loss of pregnancy. Maternal malnutrition has also been implicated in abortion. Other chronic maternal diseases affecting embryonic and fetal growth include essential hypertensive vascular diseases, ABO incompatibility, chronic nephritis and, in the second trimester, syphilis. Classification of Spontaneous Abortion •

Threatened Abortion- is characterized by unexplained bleeding, cramps and backache that may jeopardize the fetus. Bleeding persists for days and the cervix is closed. It may be followed by partial or complete expulsion of pregnancy.

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Imminent Abortion- is manifested by increased bleeding and cramping. The cervix dilates and membranes may rupture. The term “inevitable abortion” applies. Complete Abortion- is when all the products of conception are expelled. Incomplete Abortion- means that part of the products of conception is retained, most often the placenta. The cervix is dilated and will admit one finger. Missed Abortion- means that the fetus dies in utero but is not expelled. Uterine growth ceases, breasts change regress, and the woman may report a brownish vaginal discharge. The cervix is closed. Habitual Abortion- means abortion occurs consecutively in three or more pregnancies.

Induced Abortion occurs as a result of artificial or mechanical interruption or due to voluntary and effective human intervention. It may be sought as a means or an end. As an end, the main purpose is to get rid of the baby. As a means, other effects are sought as in the so-called therapeutic abortion wherein the health of the mother is concerned. Induced abortion is thus intrinsically evil and must be qualified as homicide. Subcategories Therapeutic Abortion • To save the life of a pregnant woman. • To preserve the woman’s physical or mental health. • To terminate a pregnancy that would result in a child born with a congenital disorder which would be fatal or associated with significant morbidity. • To selectively reduce the number of fetuses to lessen health risk associated with multiple pregnancies. Elective Abortion An Abortion performed for any other reason. Techniques of Induced Abortion •

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Abortion by D and C (Dilation and Curettage) – is an abortive technique of long standing. This is accomplished in the periods between 7 to 12 weeks of gestation, utilizing a curved blade introduced through the vagina into the cervix until it reaches the endometrial wall. The endometrium is then scraped carefully and thoroughly until all embryonic or fetal matters and surrounding placental tissues are removed. The procedure is then completed with the complete counting of the fetal parts. This eliminates the risk of infection or hemorrhage for an abortant mother should any tissue remains. D and C is performed under general anesthesia. Abortion by Caesarian section or by abdominal hysterectomy – is carried out in a similar fashion as in any caesarian operation. Abdominal incision is

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followed by extraction of the fetus from the uterus. However, there is one radical difference. After the umbilical cord is cut, the neonate is left to die without resuscitation. Abortion of this type is undertaken during the last trimester since no other technique is available. Abortion by suction – was pioneered by communist abortionists who utilized the suction apparatus. Later, western abortionists adopted it. Under this technique, abortion is carried out by aspirating the substance adherent to the wall and contained within the uterine cavity by means of a potent vacuum suction machine. The powerful suctioning force dismembers the minute body of the fetus, detaches it, and mangles the surrounding placental tissues. The lacerated tissues easily pass through the rubber tubing and are then collected in a glass bottle. Similar to curettage, abortion is completed by counting one by one all the body parts sucked out because retention of any tissue can lead to infection or hemorrhage of the abortant mother. Abortion is easily accomplished within two minutes. The suction technique guarantees death of the fetus at whatever moment during the first to 12th week of gestation (3 months). Abortion via Intra-amniotic filtration – is done by first extracting about 10 to 300 cc. of amniotic fluid through an abnormal puncture. This is followed by infiltration of a 20% hypertonic saline solution or 50% dextrose of water in the amniotic sac. This causes necrosis of the placenta and intoxication of the fetus. The fetus eventually dies within an hour. Abortion is completed with the expulsion of the fetus at about 36 hours after the infiltration of hypertonic solution. This technique carries a certain risk of uterine perforation, not excluding the death of the abortant mother on account of the passage of the saline solution into the blood. However, it guarantees the death of the fetus of about 16 weeks (4 months) gestation period during which the amniotic sac contains sufficient fluid to permit the lethal injection. Abortion via infection of Prostaglandin – Prostaglandin exerts powerful effects upon the contractibility of uterine muscles whenever this is infused slowly using the IV route. It usually takes effect within a few hours causing the expulsion of the fetus. This procedure supercedes abortion by intra-amniotic infiltration. Recently, a new “contraceptive pill”, RU 486 has been launched in the market. RU 486 is associated with prostaglandin which provokes uterine contraction and expels the embryo from the womb. Thus, we are dealing with an authentic abortion. Chemical Abortion is effective in the first trimester of pregnancy, chemical(also referred to as medical abortion), or non-surgical abortion comprise 10% of all abortions in the United States and Europe. The process begins with the administration of either methotrexate or mifepristone, followed by misopristol. Mifepristone (RU 486): How does this work? There are two main female hormones. The first, estrogen, causes puberty when first produced in girls and menopause when no longer produces in women. The second is progesterone. Progesterone makes pregnancy possible, it prepares the uterus for a child by enlarging it and increasing mucus in the cervix.

Mifepristone suspends the action of the progesterone and therefore, stops the pregnancy as without progesterone it cannot be sustained. The second dose of misoprostol (cytotec) is known as a prostaglandin. It is a hormone that contracts the uterus - effectively inducing labor and forcing the fetal tissue out of the uterus. After this a woman will go home, experience mild to moderate cramping, heavy bleeding as the uterus passes the fetal tissue, head aches, nausea, and a variety of other side effects. The abortion itself generally occurs in the first four to six hours after the dose of misoprostol but the side effects, especially bleeding, may last up to two to three weeks. However, the mifepristone and misoprostol combination is over 95% effective if taken within the first six to seven weeks of pregnancy. Self-induced Abortion includes the misuse of misoprostol for ulcers, and the insertion of non-surgical implements such as knitting needles and clothes hangers into the uterus. Abortion is sometimes attempted through means of trauma to the abdomen. The degree of force applied, if severe can cause serious internal injuries without necessarily succeeding in inducing miscarriage. Sex-selective Abortion – The advent of both ultrasound and amniocentesis has allowed parents to determine sex before birth. This has led to the occurrence of sex-selective abortion or the targeted termination of a fetus based upon its gender. It is suggested that sex-selective abortion might be partially responsible for the noticeable disparities between the birth rates of male and female children in some places. The preference for male children is reported in many areas of Asia, and use of abortion to limit female births has been reported in Mainland China, Taiwan, South Korea, and India. EFFECTS OF ABORTION TO THE WOMAN • • • • • • • • • • •

PHYSICAL: Woman may suffer habitual miscarriage Ectopic pregnancies Menstrual disturbances or discomfort Still births Bleeding Shock Insomnia PSYCHOLOGICAL: May manifest guilt Suicidal tendency Loss of sense of fulfillment Loss of confidence

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Loss of appetite Coma Perforated anus Fever and cold sweat Intense pain Weight loss Frigidity

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Hostility Thwarted maternal instinct Self-destructive behavior Anger, rage

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Helplessness Loss of interest in sex

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Inability to forgive herself Intense interest in babies

MORAL CONSIDERATIONS The direct and voluntary killing of an innocent human being is always gravely immoral even when it is performed as a means to a good end. The magisterium of the church has consistently condemned abortion throughout history, even when the exact moment of fetus animation is still being disputed. The sanctity of human life demands that it must be respected and protected absolutely from the moment of conception. From the first moment of his existence, a human being already possesses the rights of a person, among which is the inviolable right of every innocent human being. This alienable right must be recognized and respected by civil society and political authority. Abortion destroys life and violates the right to life. As such it is morally evil and it should not be in any way legalized and liberally permitted in the laws and constitution of a nation. Abortion and infanticide are unspeakable crimes. We should reject abortion, unless for therapeutic reasons, for it is simply the murder of an innocent being. LEGAL CONSIDERATIONS PHILIPPINES: Article II, Section 12 of the 1986 Constitution provides that “The State recognizes the sanctity of life and shall protect and strengthen the family as a basic autonomous social institution. It shall equally protect the life of the mother and the life of the unborn from conception.” Despite this position, however, the illegal practice of abortion continues and formal complaints against violators have yet to be filed in the Philippine courts. Based on the study conducted by the National Economic Development Authority (NEDA), the number of cases of induced abortion in the Philippines ranges from 150,000 to 750,000 every year. In one Metro Manila hospital alone, 4,000 cases of abortion are undertaken annually. What usually happens is that illegal abortionists perform abortions outside, and when the woman suffers from profuse vaginal bleeding, she goes to a hospital for confinement. UNITED STATES: Roe v. Wade gave strength to a woman’s right to privacy in the context of matters relating to her own body, including how a pregnancy would end. However, the Supreme Court also has recognized the interest of the states in protecting potential life and has attempted to spell out the extent to which the states may regulate and even prohibit abortions. First Trimester. In the first trimester the pregnancy starts with a fertilized egg that divides to become tissue and cleavage, which becomes an embryo. In these first three months the embryo goes through organogenesis and develops

body organs, its heart beats after the fourth week, brain waves can be monitored after six weeks, and by the eighth week all major body parts are present. At the end of the trimester the embryo has matured into a fetus. The decision to undergo an abortion procedure is between the woman and her physician. Second Trimester. During the second trimester the fetus grows from the approximately 5cm it was at the end of the first trimester to about 30cm long. It also begins to move as it is continuing to mature. During approximately the fourth to sixth months of pregnancy, the state may regulate the medical conditions under which the procedure is performed. The constitutional test of any legislation would be its relevance to the objective of protecting maternal health. Third Trimester. By the third trimester it becomes fully-grown, completely fills the capacity of the womb, and fully matured at about 50cm long. Since the heart has been beating since the beginning of the first trimester, a fetus in the stages of the second and third trimesters are almost always considered alive and, therefore, state property to some extent unless there are extenuating circumstances. During the final stage of pregnancy, a state may prohibit all abortions except those deemed necessary to protect maternal life or health. UNITED KINGDOM: There are two key statutes relevant to abortion: the Offences Against the Person Act and the Abortion Act. The Offences Against the Person Act 1861 The Offences Against the Person Act 1861 remains the definitive law in England. It gives statutory grounds to the effect that abortion is a crime except where subsequent legislation provides protection against criminal prosecution. The Abortion Act (1967), amended 1990 The Abortion Act was designed to tackle two main issues. The first was increasing concern at the number of ‘back street abortions’, despite their being illegal. These were often medically quite unsafe, and an increasing number of women were being admitted to hospital with complications from such abortions. The second was the lack of clarity over the question of when a doctor could carry out an abortion for the sake of the mother’s health. • Prior to 24 weeks a doctor may carry out an abortion, with the woman’s consent, on very wide grounds. • After 24 weeks abortion is only lawful either to prevent risk of considerable harm to the mother, or for the sake of the fetus. • Except in an emergency two doctors are required to be of the opinion that abortion is justified n one of the grounds stated in the Act. • It is generally assumed that when the Act states that ‘pregnancy has not exceeded its 24th week’ it means 24 weeks since the first day of the woman’s last period. ETHICAL CONSIDERATIONS There are specific laws that pertain to abortion. Certain laws even permit abortion within a maximum time limit. They state that abortion is possible only up to a certain stage during pregnancy and should essentially be at the woman’s

request. Abortion is allowed only for medical reasons in very exceptional circumstances, e.g., to save the mother’s life. Today, with the legislation and positive authorization of abortion in some cases, things have changed. A review of the legal proceedings of those countries which have legalized abortion show some differences in modalities, which can be observed upon reading the World Health Organization chronicle of 1976. This chronicle summarizes the conditions or situations in which the legislation of different countries authorizes the practice of abortion. Such situations are • When the mother is authorized to safeguard her physical and mental health; • When pregnancy is the consequence of rape or incest, or when it occurs in minors; • When the mother contracts sub-cola during a critical stage of gestation or has been exposed to other risks which can lead to defective fetal development; • When Down’s syndrome or other chromosomal abnormalities are diagnosed through amniocentesis; and • When the parents are mentally deficient and considered incapable of adequately rearing a child. MATERNAL – FETAL RELATIONS Legal considerations Over the last decade a number of cases have been heard in the courts concerning the legality of enforcing a caesarian section n an unwilling woman. Most cases have been heard in great haste, and without legal representation for the pregnant woman. The Royal College of Obstetricians and Gynaecologists produced guidelines that stated: • Obstetricians must respect the woman’s legal liberty to ignore or reject professional advice…. • We conclude that it is inappropriate…., to invoke judicial intervention to overrule an informed and competent woman’s refusal to treatment, even though that refusal might place her life and that of her fetus at risk. The courts have interpreted common law as giving a competent woman the right to refuse treatment even where the life of the fetus is at grave risk. However, they fall over backwards to find the woman incompetent in order, perhaps, to justify saving the fetus, and perhaps on the view that the woman will be glad afterwards that that was the decision taken. Ethical considerations In thinking about the ethical issues raised by decisions or interventions in reproductive medicine it is important to distinguish between an identity-preserving and an identity-altering intervention or decision.

An example of an identity-preserving intervention is when a pregnant women drinks large amount of alcohol. If the child is subsequently born with some brain damage as a result, it has been harmed by the mother’s alcohol intake. An example of an identity-altering decision is when a woman decides to delay reproduction from, for example, 30 years to age 40 years. A different child will be born as a result of her decision. Suppose that she has a child (child a) at age 40 that is born with Down’s syndrome. The likelihood is that, had she conceived a child at age 30, it would not have suffered from Down’s syndrome. Has Child A been harmed as a result of her decision to delay reproduction? The decision has altered the identity of the child who is born. Had she conceived at the age 30 she would have given birth to a different child. Because child A would not have come to existence at all, had she not decided to delay reproduction, it is not clear that child A has been harmed by having Down’s syndrome as a result of her decision. On one view of harm, the decision could only have harmed child A if it would have been better for A not to have existed at all than to exist with Down’s Syndrome.

Artificial insemination is a relatively simple procedure in which sperm, either from the woman's husband or a donor (if the husband is unable to produce sperm), is inserted into the woman's uterus directly rather than through sexual intercourse. It is normally the first infertility treatment a couple will try because it is simple to accomplish, involves no pain for the woman, and is inexpensive

compared to other reproductive technologies. It is most often employed when a woman's husband has a low sperm count, or his sperm has difficulty in reaching the woman's egg. HUMAN ARTIFICIAL INSEMINATION In humans, artificial insemination is usually part of an infertility treatment; either the woman’s partner’s sperm (artificial insemination by husband, AIH) or donor sperm (artificial insemination by donor, AID) can be used. Earlier a popular form of artificial insemination was AIC, in which the sperm of the husband and a donor were mixed. ARTIFICIAL INSEMINATION BY HUSBAND Artificial insemination with the husband’s sperm is, relatively speaking, nonintrusive. The main cause of concern might be the manner in which the sperm is obtained. If sperm is obtained by means of masturbation, and particularly where pornographic stimulation is used, the issue is one of human dignity. If, as is now more common, testicular biopsy is used, the issue is one of the proportions between risk and benefit, as in the case of all surgery. Some obstetricians have drawn attention to the fact that there is no reason why any person other than the couple needs to be involved in AIH. When the woman's husband's sperm simply needs help in fertilizing the egg, artificial insemination by husband (AIH) is performed. Most people have no moral difficulty with such a procedure. It is simply viewed as medical technology providing assistance to what could not be accomplished by normal sexual intercourse. The genetic materials that are combined when conception occurs (and frequently it takes more than one insemination for conception to occur) belong to the woman and her husband, and they are the ones who plan to raise the child. Most people agree that there are no morally significant differences between AIH and procreation by intercourse. The exception to this is the Roman Catholic tradition, which views most reproductive interventions -including contraception -as a problem. ARTIFICIAL INSEMINATION BY DONOR There are many cases, however, in which the husband is not able to produce sperm at all. In these cases, instead of artificial insemination being performed with his sperm, a donor provides the sperm. AID (artificial insemination by donor): A procedure in which a fine catheter (tube) is inserted through the cervix (the natural opening of the uterus) into the uterus (the womb) to deposit a sperm sample from a donor other than the woman's mate directly into the uterus. The purpose of this procedure is to achieve fertilization and pregnancy. AID is also called heterologous insemination. AID is distinguished from homologous insemination that is artificial insemination by husband (AIH).

One of the options for treating severe male factor infertility, or for achieving fertility where no male partner is involved, is artificial insemination using donor sperm or, more commonly, donor insemination (“DI”). The donation is almost always made anonymously so that the father cannot be traced by the child, nor can the father elect to make contact with the child, potentially disrupting a harmonious family. In most cases, the sperm of two or three donors is mixed together, thus making it easier to conceal the identity of the father. In the case of AID, the child to be born will, at least, be born of the biological mother. On the male side, however, the link between paternity and the exercise of fatherly care is broken. The fact that one of the couple is a biological parent and the other is not can create its own tensions in the family. AID also requires careful screening of donors to ensure that there is no risk of the transmission of Hepatitis, HIV, or genetic defects. Once the principle of the screening of donors is accepted, logic would suggest that donors should also be selected for their positive genetic characteristics. MORAL CONSIDERATION The assumption of Scripture is that children will be raised by the people to whom they are genetically related. The Bible assumes the concept that only husband and wife will be parents of children. There is continuity between the genetic and social roles of parenthood. The Bible never clearly defends this notion; it simply assumes it. Perhaps the reason for this is that it is a notion that does not need defending, similar to the doctrine of the existence of God. Of course, Scripture could not directly address situations in which these reproductive technologies were available. But even though techniques like AID are not the subject of direct biblical teaching, there are biblical principles that can be applied to these different methods of alleviating infertility. Christian tradition on the family, for example, has always assumed that children will be born into a stable family setting of monogamous marriage in which sexual relations between father and mother result in the child's birth. The principles underlying such an assumption are the integrity of the family and the continuity between procreation and parenthood. Heterologous artificial fertilization violates the rights of the child; it deprives him of his filial relationship with his parental origins and can hinder the maturing of his personal identity. Furthermore, it offends the common vocation of the spouses who are called to fatherhood and motherhood: it objectively deprives conjugal fruitfulness of its unity and integrity; it brings about and manifests a rupture between genetic parenthood, gestational parenthood and responsibility for upbringing. Such damage to the personal relationships within the family has repercussions on civil society: what threatens the unity and stability of the family is a source of dissension, disorder and injustice in the whole of social life.

The process of conceiving a child from a donor may be thought of as adulterous, since attention turns from the spouse who cannot provide the child to someone else outside marriage that can. A pregnancy achieved by a married couple through the use of donor sperm or egg cannot be morally acceptable, no matter how consensual the act. Homologous artificial insemination within marriage cannot be admitted except for those cases in which the technical means is not a substitute for the conjugal act but serves to facilitate and to help so that the act attains its natural purpose. This teaching is not just an expression of particular historical circumstances but is based on the Church's doctrine concerning the connection between the conjugal union and procreation and on a consideration of the personal nature of the conjugal act and of human procreation. "In its natural structure, the conjugal act is a personal action, a simultaneous and immediate cooperation on the part of the husband and wife, which by the very nature of the agents and the proper nature of the act is the expression of the mutual gift which, according to the words of Scripture, brings about union 'in one flesh' .” Thus moral conscience "does not necessarily proscribe the use of certain artificial means destined solely either to the facilitating of the natural act or to ensuring that the natural act normally performed achieves its proper end.” ETHICAL CONSIDERATION AID raises ethical questions that are not raised by AIH. Since AIH takes place between husband and wife, the integrity of the family is maintained, and there is continuity between procreation and parenthood. But AID introduces a third party into the reproductive matrix, and someone who donates sperm to be used for AID is now contributing genetic material without the intent to parent the child that will be produced through the use of his genes. LEGAL A child born through donor insemination/ AID is considered to be the legal child of the mother and her spouse or partner. The legal obligations of the mother and her spouse to such a child are no different to that of any other couple. If the partners are not legally married, and there is any concern about your obligations to the child, you should consult your lawyer prior to committing to this treatment. HISTORY Many people think of artificial insemination as a modern technology but it has a long history. Thus, apparently artificial insemination was attempted on Juana, wife of King Henry IV of Castile. 1677 - The Dutch scientist Leeuwenhoek saw spermatozoa through the newly invented microscope.

1780 – An Italian priest and physiologist named Lazzaro Spallanzani performed an experiment in his laboratory that revolutionized the way scientists thought. Until this point scientists had a very primitive understanding of conception largely based on how plants grew. Spallanzi’s experiment on dogs proved for the first time that there must be physical contact between the egg and the sperm for an embryo to develop. With this new knowledge Spallanzi experimented n frogs, fish, and other animals and was successful. 1899 – Efforts to develop practical methods for AI were started in Russia. 1922 – Papers on artificial insemination in horses had been published. 1940(mid) – Artificial insemination had become an established industry. 1949 – Improved methods of freezing and thawing sperm were developed. 1950 – Idea for adding antibiotics to the sperm solution came in from Cornell 1978 – July 25, first so-called test-tube baby, Louise Brown, was born in Oldham, England. The technique was developed in the United Kingdom by Doctors Patrick Steptoe and Robert Edwards. 1980 – June 23, the world’s third IVF baby, Candice Reed was born in Melbourne, Australia. Major pioneering developments in occurred in Australia under the leadership of Carl Wood, Alan Trounson and Ian Johnston 1981 – The first successful IVF treatment in the USA producing Elizabeth Jordan Carr took place under the direction of Doctors Howard Jones and Georgeanna Seegar-Jones in Norfolk, Virginia. 1986 – The first test tube baby in India was born. The doctor who performed the process was Dr. Indira Hinduja at the Hinduja in Mumbai.

IN VITRO FERTILIZATION In vitro fertilization simply means fertilization "in glass," as in the glass container of a test tube or Petri dish used in a laboratory. However, neither glass nor test tubes are being used; the term is used generically for laboratory procedures. The process involves hormonally controlling the ovulatory process, removing ova from the woman’s ovaries and letting sperm fertilize them in a fluid medium. The fertilized egg (zygote) is then transferred to the patient’s uterus with the intent to establish a successful pregnancy. Since the procedure is so expensive ($10,000 -- the extraction of the eggs being the most expensive part of the process), all of the eggs are fertilized in the lab. In this way if none of the fertilized embryos are successfully implanted, reimplantation can occur without much additional cost or lost time, since to extract the eggs would involve waiting until at least the woman's next cycle. Normally, more than one embryo is implanted in the woman's uterus, since it is uncertain how many, if any at all, will be implanted successfully. The actual number implanted depends on various factors relating to the condition of the eggs and the health of the woman. It is not unusual to have some if not all of the embryos spontaneously miscarry. In order to keep the procedure as cost-effective as possible, embryos are frozen in storage to be used later if the first attempt fails – EMBRYO CRYOPRESERVATION. In some cases, however, more embryos successfully

implant than the woman is able to carry without endangering her health and at times even endangering her life. In the medical context, the IVF technique is done to overcome female sterility due to the obstruction of the fallopian tubes which prevents the ovum from passing through the oviduct (tube) where it meets the sperm and then descends to the uterus for burrowing. The other significant goals of IVF in the medical field are: o To observe and evaluate the process of fertilization through in vitro, which is not possible in the case of fertilization in utero o To test the effectiveness of auto-fertility agents o To evaluate the fertilization of the ova of patients with infertility problems o To assess the structural and biochemical normality of conception in patients who have repeated spontaneous abortion o To better understand the mechanisms needed for genetic studies o To advance the understanding of normal and abnormal cell growth and differentiation o To increase knowledge that is useful in contraceptive technology and in the alleviation of genetic disorders and other deformities

LEGAL, MORAL AND ETHICAL CONSIDERATION Both of the possibilities (embryos in storage and having more children in utero than the woman can safely carry) raise significant legal and moral issues about IVF. For example, what happens if, during the time in which the embryos are in storage, the couple divorces and a "custody" battle ensue over the unused embryos? A case like this was recently resolved in court in Tennessee. A couple who had utilized IVF later was divorced and the woman wanted to use the embryos to have a child. Her ex-husband refused, claiming that he did not want his progeny running around without his knowledge even of their existence. They went to court to have their dispute arbitrated. The court ruled in favor of the exhusband, holding that one's procreative liberty also gives one the freedom not to procreate, and thus the embryos could not be used without the man's consent. What to do with frozen embryos if they are not needed raises significant moral issues. The alternatives would appear to be to keep the embryos in storage indefinitely (at a cost of around $150/year), to destroy them, to allow the couple to donate them to another infertile couple, or to use them for experimental purposes. Since, as most Christians believe, the right to life is acquired at conception, destroying embryos or using them in experiments is problematic. Destroying embryos outside the body is the moral equivalent of abortion, and science cannot experiment on someone with basic human rights without that person's consent,

particularly since experimentation on the embryo would result in its destruction. Storing the embryos indefinitely only postpones dealing with this issue. That leaves donation of the embryos as the only viable alternative. Yet this is problematic too since it involves a separation of the biological and social roles of parenthood that is a significant part of the biblical teaching on the family. It might be possible, however, to view embryo donation in a way that is parallel to adoption -- as a reimplantation adoption in which the couple who contributed the genetic materials to form the embryo consent to give up parental rights to their child before implantation instead of after the child's birth. This would require a significant change in the adoption laws of many states, since they frequently do not recognize any consent to adoption as valid and legal until a period of time after the child's birth. These difficulties should cause Christians to think twice before utilizing IVF. A second problem arises not from the failures of implantation, but from its successes. As noted above, more embryos are routinely implanted than will survive in the uterus. But occasionally a woman is left with more developing embryos than she can carry to term without risk to her health and life. In these cases, the woman and her husband and her doctor have very difficult decisions to make. When this happens the doctor will normally recommend what is called selective termination of one or more of the developing embryos. This is done not for convenience' sake, but out of a genuine concern for the life of the mother. Not only does this involve trading one life or more (the developing child[ren]), but the doctor is faced with the decision of which one(s) to terminate and how to make that decision. If the mother's life is clearly at risk in carrying all the unborn children to term, then it would appear justified to terminate one or more of the fetuses in order to save the life of the mother. This is analogous to cases in which abortion is justifiable when carrying the pregnancy to term would put the mother's life at grave risk. However, the agony of making such painful decisions must surely be considered prior to utilizing IVF to alleviate infertility. To avoid these dilemmas, a couple using IVF should request that only the number of eggs be fertilized that the couple will actually have implanted. In addition, they should request that only the number of embryos is implanted that the woman could carry safely should all of them successfully be implanted. Another moral issue is the matter of a single woman seeking pregnancy through in vitro fertilization. It has been argued that since there is no physical contact between the woman and the sperm donor, there is therefore nothing immoral about achieving pregnancy in this method. But God does not intend procreation to take place in a vacuum.

ORGAN DONATION The possibility of replacing organs with those taken from animals or from other human beings was finally realized in the 20th century. The organs most commonly and frequently transplanted are the kidneys, cornea, and the skin. The less frequent transplanted organs are the heart, lungs, pancreas, bone marrow, and testicles. Unfortunately, for the length of the technology has been available, there has been a huge and frustrating shortage of supply. The number of patients awaiting an organ transplantation exceeded 75,000 in 2001, while the availability of supply was fewer than 25,000. This on going shortage has created in some cases perhaps the most challenging and basic of health care policy considerations. “Who is to live, and who is to die?”  The national policy on the procurement of tissues for transplant might be best described as volunteerism.  A donor card is one of the main signals for permission to harvest organ from a potential donor.  In case of patients who do not have a donor card or has not given a consent to donate organs upon his death, the following individuals have the authority to decide in allowing the procurement of organs for donation or transplantation:  spouse  son or daughter of legal age  either parent  brother or sister of legal age  legal guardian over the person decedent at the time of his death Potential Donors Cadaveric Organ Donation It is primarily focused on the criteria used to determine death. At present, there are two ways of determining death. Both have a foundation in the Uniform Determination of Death Act, which states that:  irreversible cessation of circulatory and respiratory function or  irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A. Non-heart-beating Organ Donation It proceeds on the basis of circulatory-respiratory criteria. In a typical scenario, a patient’s heart stops beating and the patient can no longer breathe.

The patient’s family opts for organ donation. The Institute of Medicine recommends a five minute wait before the procurement of organs. B. Brain-Dead Donors It is the neurologic death of a patient. The patient must first meet the criteria for brain death as presented by the Harvard Medical School and requiring the consent of the family to remove all artificial life support mechanisms to allow the patient die completely. Living Organ Donation Living donation does not only provide a way to decrease the shortage of organs for transplantation but also it presents several advantages over cadaver donation. It reduces the wait for the recipient, permits the surgery to be scheduled ahead of time and reduces cols-ischemia time. Living Donation as Mutilation When ethically analyzing living organ donation, the first question Catholic ethicists will ask is whether living organ donation is intrinsically wrong, despite the obviously noble and beneficent motives that most donors presumably have. Living organ donation does constitute a kind of mutilation insofar as organs or parts are removed from the body; and ordinarily, bodily mutilation is forbidden. According to St. Thomas of Aquinas, “If…a member is healthy and continuing in its natural state, it cannot be cut off to the detriment of the whole.” The Catholic Catechism states that, it is “morally inadmissible directly to bring about the disabling mutilation or death of a human being, even in order to delay the death of other persons.” However, the Ethical and Religious Directives embody these same principles but they articulate them within a conditional statement of permission: the transplantation of organs from living donors is morally impermissible when such a donation will not sacrifice or seriously impair any essential bodily function and the anticipated benefit to the recipient is proportionate to the harm done to the donor. This type of donation is also justified by the so-called Principle of Totality: “A healthy man may voluntarily donate any part of his body not essential to his life, without contradicting nature, for the benefit of his sick neighbor.” Characteristics of a Living Organ Donor • competent • willing to donate and free from coercion • medically and psychosocially suitable • fully informed of the risks, benefits, and alternative treatments available to the patient Informed Consent • There must be a provision of information that a reasonable would want to know in making a decision

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It also involves that the potential donor is not under coercion and is capable of giving free consent.

Financial Incentives to Increase Live Organ Donation  The 1984 National Organ Transplantation Act prohibits the sale or purchase of human organs or tissues.  “The freedom of the prospective donor must be respected, and economic advantages should not accrue to the donor.” (Ethical and Religious Directives)  It could lead to the exploitation of the poor and interfere with their free informed consent.  It could lead to potential donors to withhold important information about their health history.

Presumed Consent  also called “opting out”  a system that legally allows the use of a deceased patient’s body organs for transplantation, unless the patient had formally registered the desire not to be a donor  may run counter to the social expectations and cultural values of individuals, families, and health professionals Required-Request  proposed by Arthur L. Caplan, a bioethicist  ensures that the next of kin or legal guardian of every potential donor was notified of the transplantation option and was asked to make a donation of their relative’s organs for this purpose ORGAN TRANSPLANTATION Kinds of Transplantation Autograft – surgical transplantation of an organ from one part of the body to another location in the same individual Homograft – the transplantation of an organ from one individual to another of the same species Heterograft – transplantation of organs between individuals of different species, for instance, from animals to man or from dogs to monkeys. Isograft – transplantation of compatible tissues between two genetically identical persons

The type which concerns us most is the heterograft transplantation. Informed Consent “Organ transplants are not morally acceptable if the donor or those who legitimately speak for him have not given their informed consent. (Catholic Catechism) It is a way of respecting human dignity. Failure to inform patients or to solicit their consent to surgically invade their bodies is generally a failure to respect them as persons.

Genetic Engineering is the alteration of an organism's genetic, or hereditary, material to eliminate undesirable characteristics or to produce desirable new ones. Genetic engineering is used to increase plant and animal food production; to diagnose disease, improve medical treatment, and produce vaccines and other useful drugs; and to help dispose of industrial wastes. Included in genetic engineering techniques are the selective breeding of plants and animals, hybridization (reproduction between different strains or species), and recombinant deoxyribonucleic acid (DNA). Genetic engineering means direct intervention in the genetic make up of a living being, the replacement of genes or the addition of new genes to the genetic code or blueprint of an organism. It involves the whole process of altering genes which is the building blocks of life, in order to achieve either a radically or a completely new human being. The essence of engineering is design: it being an art and science concerned with the practical application of knowledge, as in the design, construction and operation of such thing. Research into recombinant DNA is indeed a marvel of modern science, but it also brings forth some of the greatest fears of all. Scientists are now generally altering organisms for various purposes. We have heard about genetically altered fruits and vegetables, but the range of experiments in extremely varied. The

fear is that experimenters will develop organisms that will endanger humans or other beings. The possibilities are the stuff of science fiction, and such fears have led to calls for restricting the research or even banning it altogether. Such calls have increased in recent years, and may argue for a complete ban on genetically altered foods. Additional issues have arisen concerning conflict of interest among scientists who are supported by government but turn to the marketplace for additional compensation. The ethical issues that arise involve those listed in connection with the human genome project, but others worry whether scientist can be trusted with the awesome responsibilities that come with each dangerous research. Can we rely on scientists to take the necessary precautions to keep the organisms they create harmless to human beings? In recent decades, genetic engineering has been revolutionized by a technique known as recombinant DNA, or gene splicing, which scientists use to directly alter genetic material. Genes consist of segments of the molecule DNA. In recombinant DNA, one or more genes of an organism are introduced to a second organism. If the second organism incorporates the new DNA into its own genetic material, recombined DNA results. Specific genes direct an organism's characteristics through the formation of proteins such as enzymes and hormones. In humans, recombinant DNA is the basis of gene therapy, in which genes within cells are manipulated in order to produce new proteins that change the function of the cells. Recombinant DNA techniques have transformed genetic engineering in plant and animal food production, industry, and medicine. Scientists also have employed recombinant DNA techniques to produce medically useful human proteins in animal milk. In this procedure, the human gene responsible for the desired protein is first linked to specific genes of the animal that are active only in its mammary (milk-producing) glands. The egg of the animal is then injected with the linked genes. The resulting transgenic animals will have these linked genes in every cell of their body but will produce the human protein only in their milk. Recombinant DNA technology also is used in the production of vaccines against disease. A vaccine contains a form of an infectious organism that does not cause severe disease but does cause the body's immune system to form protective antibodies against the organism. Gene therapy, in which a healthy gene can be directly inserted into a person with a malfunctioning gene, is perhaps the most revolutionary and promising of recombinant DNA technologies, but many problems remain to be solved in getting the healthy gene into human cells. The use of gene therapy has been approved in more than 400 clinical trials for diseases such as cystic fibrosis, emphysema, muscular dystrophy, and adenosine deaminase deficiency, in some instances with promising results. However, there as yet have been no cures. Genetic engineering techniques enabled production of scarce human hormones and other materials for use as drugs. A new biotechnology industry started producing these materials for medical use. Scientists also began genetically modifying sheep and other animals to produce drugs in their milk Human genetic engineering opens up new scientific, social and medical possibilities:

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a rapid increase in the rate of accumulation of knowledge about the genes of humans and other organisms; the possibility of altering the genetic constitution of human beings (perhaps remote) and other organisms.

THE HUMANE GENOME PROJECT AND MEDICAL PROGRESS The human genome project which provides a complete list of the chemical letters that compose the map of the human genome has been completed. The promise of this information and its potential application is remarkable and may change the nature of health care itself. The psychologist Thomas Bouchard has said, “For almost every behavioral trait so far investigated, from reaction time to religiosity, an important fraction of the variation among people turns out to be associated with genetic variation.” Does this mean that all of the small idiosyncrasies that make us unique humans (both lovable and frustrating) are within our gasp to change? What we have not seen yet in regard to the information gained from the project of its application, but it is likely that we will shortly see a number of specific medical treatments based on the information. What is perhaps missing is the overarching vision that provides the way forward beyond the initial steps. The human genome project maps the whole human genome, the complete genetic makeup of the human being. Given that this is pure research, the only question to ask is whether such knowledge is proper for human possess. Critics of the human genome project could point to the character of Faust (or Dr. Faustus) in order to show how one can be led astray by the unquenchable thirst for knowledge. Dr. Faustus is a scholar so determined to possess more and more knowledge – especially concerning the deepest subjects such as the secret of life and afterlife – that he is willing to trade his soul to the devil for it. Faust makes the bargain and is happy with the bargain until the devil comes for his payment. In the same way, we will be happy with what our knowledge will bring us, but we will be devastated when we are called upon to pay the fee. Like Icarus, we will fly too high, and our wings will melt. This is, in fact, how Marlowe underscored the character of Dr. Faustus. Modern science has achieved more than we could have dreamed possible. There is no denying the good that science has done for us. On the other hand, there is no doubt that the dangers are just as great as the benefits we have gained. Can we go too far in our attempts to understand nature? Have we gone beyond the limits of human personality? These are questions that arise when we consider current research in genetics and attempts to use this knowledge for the improvement of human life. Genes are the basic carriers of the information that makes us what we are. If we reach the point at which we understand these biological building blocks, will the power that comes with such knowledge be too much for humanity to use responsibly? These same questions were raised with the development of atomic science and have yet to be adequately resolved. For example, antinuclear activists argue that the consequences of a nuclear accident at a power plant outweigh the possible benefits of the plants in operation, and that the problems with waste disposal have yet to be overcome. Such questions are arising more and more in all areas of science, but generic science has possibly the greatest potential for good and ill.

GENETICS AS SOCIAL POLICY Other ethical issues arise when we consider the possibility of turning genetic testing into social policy. Some suggest that all parents be tested for generic diseases in order to avoid the social and personal costs of genetic impairment. Others worry that this will lead to a coercive policy of abortion of preventing parents from having children. Such policies raise still further issues when they are directed to the certain ends, as they are with eugenics. Eugenics is the practice of manipulating the genes of offspring through either breeding or genetic alteration. Should we attempt to eliminate some or all genetic abnormalities? Should we improve the race of human beings by increasing intelligence through genetic selection? Our most recent experience with eugenics came when the Nazi experiments on human beings were revealed. It is therefore understandable if people are a bit apprehensive over any renaissance of eugenic ideas. Nevertheless, we should always give proposals a hearing lest some suspect that we are avoiding discussions out of fear of the truth. The ability to screen and prenatally test for genetic disease raises the possibility that we could eliminate genetic diseases with a policy of negative eugenics or even improve the genetic pool of humanity by selecting for positive attributes – positive eugenics. A moderate policy of eugenics that has the intention of eliminating the most serious genetic diseases seems sensible enough, but even such a moderate approach is fraught with difficulties. The number of people carrying a recessive gene is rather large, and it is difficult to justify preventing such people from reproducing merely because they have a recessive gene. Given that it is impossible to have a genetically impaired infant with only one parent contributing a recessive gene for, say, sickle cell anemia, it would be hard to justify preventing such a couple from having children. On the other hand, if we do not eliminate these recessive genes, we will never overcome genetic disease. An extreme program of negative eugenics faces practical difficulties that make it almost, if not in fact, impossible to implement. Could we eliminate all genetic disease? Since the majority of people Carry at least one recessive gene for some genetic disease, a radical policy of negative eugenics would eliminate a large portion of the human population. But there is a more important question to ask: Would we want to eliminate genetic disease? There are dangers involved in shrinking the gene pool. Our resistance to various sorts of biological attack is dependent to a great degree on our genetic variety. Take, for example, sickle cell anemia. We know the disease only from its negative effects in the United States, but in malarial Africa, where the disease developed, being a carrier of the disease functions to ward off the effects of malaria. A program of positive eugenics – here understood to include not only breeding but genetic intervention – attempts to improve the gene pool by increasing the numbers of those with positive attributes. Polls have shown that if this technology were available, many parents would make use of it. It is unlikely that we could ever develop anything like a “superhuman,” but parents may be able to specify specific traits they would prefer to hand down to their children. There would be pressure upon parents (and the same would be true of nations) to utilize positive eugenics in order to increase their children’s chances in a competitive market. But the problem ultimately is a scientific one; it is almost impossible to

imagine a successful scientific program of eugenics, positive or negative. At this stage, the conclusion seems to be that our best course of action is to use genetic testing to help individuals rather than to later the genetic makeup of humanity. Stem cell research is another area that both gains from and suffers from the attempts to weld together a cohesive social policy within the glare of public debate and politics. These amazing cells are the topic of heated debate. Human embryonic stem cells are the building blocks of life. They are like blank slates, potentially capable of becoming any cell in the body. Early in pregnancy, they begin to differentiate into all of the body’s specialized tissues and organs. Imagine the possibilities if we could figure out the switching mechanisms for these cells and coax them to grow the specialized tissues we need. It does not take a great deal of imagination to see the application in regard to spinal injuries, juvenile diabetes, multiple sclerosis, cancer, and Parkinson’s disease. We could even produce organs and tissues from cloned cells that would be genetically identical to the intended recipient. The problem is that we do not know at this time how to coax stem cells into doing any of the things we imagine that they could do. So when we are told that President Bush has banned stem cell research and is cruelly delaying cures for Parkinson’s disease, multiple sclerosis, Alzheimer’s, spinal cord injuries, and other afflictions too numerous to mention, you may get the feeling that we are right on the brink of these applications and the president is standing in the way. It is interesting to note that the public support from stem cell research becomes much stronger when you add Alzheimer’s to the list of potential cures, even through there is little evidence that this is a potential application because Alzheimer’s is so complex. In August 2001, President Bush attempted a compromise: scientists could apply for federal funding only for research utilizing seventy-eight existing stem cell lines. (A stem cell line is a family of constantly dividing cells, the product of a single embryo.) Since the announcement, the true number of available and suitable lines appears to be closer to twenty than the higher number. These are existing lines created using now-obsolete techniques and are considered less suitable than some of the newer lines. However, they appear adequate for research into the switching mechanisms, even if they would not be suitable for future therapeutic applications. The restrictions do not hamper the use of private funds for the other lines, only federal funds. In effect, what President Bush did was to draw a line with federal funding. In this compromise, he managed to irritate just about everyone. In that embryos are destroyed in the process, he went beyond many of the more fundamental of his political base, and by not swinging open the door to all the lines (both present and future) with federal funding, he has left himself open for criticism that he is keeping patients from getting the miraculous cures that are being promised. As Ron Reagan, the son of the late Republican president, said at the 2004Democratic Convention, the stem cells are “magic”; imagine “your own personal biological repair kit standing by at the hospital.” The president’s dilemma in regard to this research is tied to the word embryo. Human life begins with the embryo, which grows into a fetus, then an infant, then a child, then an adult. One can stand on pretty firm moral ground and argue against the justification of killing an adult, child, or infant for research purposes, the aim of which is to provide body parts for other human beings. We then are back to whether the embryo should have the same moral protections.

The argument from this duty-oriented position is that moral tradition teaches that we must treat every living member of the human species, including embryos, as a human person with fundamental rights, including the right to life. Some have argued that if a clear line is not drawn, then other populations, such as those in persistent vegetative states, could be at risk in the future. If you draw the line at the moment of conception, then because we are all of equal dignity, we are

not at each other’s disposal. Does the use of human embryos as raw materials for biotechnology determine the value of human life? GENETIC TESTING It refers to biochemical studies or chromosomal analysis for purposes of genetically-caused diseases. Such testing is currently employed to detect the carriers of recessive disorders, such as Tay Sachs disease and Phenylketonuria in newborn infants. If diagnosed early, this genetically-based “inborn error of metabolism” can be controlled my means of a special diet so that the brain damage which may otherwise result from the disease can be limited. In this light, the wisdom of undergoing medical examination for chromosomal analysis before marriage is highly recommended, especially for suspected carriers of geneticallyrelated diseases. Doctors can test couples to see if it is possible that they will give birth to a genetically impaired infant. For example, we can now test couples for sickle cell, a disease that deforms red blood cells into thin, elongated sickle-shaped forms and causes anemia, cough, and muscle cramps. Sickle cell occurs only when both parents are carriers of the recessive gene. If both parents are carriers, there is a 25 percent chance that the child will have the disease. Is this too much of a risk for parents to take? Depending upon how paternalistic we are, we might (1) not allow them to have children, (2) suggest strongly that they do not have children, (3) refuse to pay the medical expenses (this would be a decision for insurance companies and/or government), or (4) merely leave it up to the parents whether to take the risk. Most would leave the decision up to the parents, but some would argue that the parents should not be allowed to have a child when the risk is so high. It is argued that it is unfair to bring a child into the world knowing that it will have such a burden to bear. Sickle cell is instructive, however, in that it is a disease that primarily afflicts people of African descent. To refuse to allow people children who are members of a minority may suggest racist motives. But there are other diseases that are not so selective. Are we to restrict people afflicted with nonracially connected genetic disease? Many people believe that it is their right to bear children, however they turn out. It is further argued that there are many afflictions that are not genetically caused or cannot be tested for. Why might such people be allowed to be born but not those with a disposition to diseases we can test for? The assumption here is that existence is a good thing; for some it may not be, and then testing would be preventing injury. This raises a deep problem: Can existence be an injury? At first glance, human existence could be understood as an injury in utilitarian terms if the prospective life would likely contain more unhappiness than happiness. But this will not do, because ordinary life is a veil of tears for many people. To be useful for our purposes in the argument that asserts that existence can be an injury, it must be the case that bodily or mental impairment must be significantly true for many diseases, and this would be immoral for such a person to be brought into the world. Some argue that the perspective employed in such an argument is not the correct one. The proper perspective is that of the person afflicted, and from such a perspective any sort of existence may be preferable to none at all. It may be that

great suffering may be endurable if just a little happiness is possible, and this is almost always the case. There is also a problem of anticipating what a future person would prefer. Given the difficulties of such calculations, some argue that there can be no good argument against having children. A middle ground may be found by referring to actual cases. Some diseases offer only a brief and painful existence, while others are so seriously painful and prolonged that the question of a worthwhile life is out of the question. On the other hand, some diseases are not as severe. Take, for example, Down syndrome. Such children are afflicted with serious problems, but the severity varies widely. It is often pointed out that Down syndrome children frequently lead happy lives. Some argue that we must also never underestimate the human spirit and its ability to overcome adversity. As a notable example, Helen Keller is known for having overcome devastating odds to lead a fulfilling life. The response to this argument is that one case does not a policy make. We must ground any moral policy in the reality of the overwhelming majority of cases. Policy should aim at the majority, and exception to the rule – the hard cases – should be regarded as exceptional. It may be too much to expect that all those with Helen Keller’s afflictions be able to achieve what she did. We may be able to test for genetic predispositions in the future. Some people are more genetically predisposed to certain diseases (such as cancer) and to react to toxic chemicals that cause diseases. Roughly 10 percent of the population have bodies that produce enzymes that combine with hydrocarbons and produce carcinogenic substances. One can imagine companies refusing to hire potential employees who are genetically disposed to disease caused by the toxic chemicals used in certain industries. In fact, this is already happening without the benefit of genetic testing; the mere occurrence of several instances of a disease in a family has led companies to gauge the cost and availability of insurance accordingly. One can therefore assume that as actual tests become available, the possibilities for the discrimination will be great. Given that we have no control over our genetic makeup, the fairness of such practices must be questioned. A pregnant woman can also undergo prenatal diagnosis through the following procedures:  Amniocentesis is a prenatal procedure in which the malformation or deformity of the fetus in the utero can be detected as early as the fifth month or the 16th week of the pregnancy onwards. In this process, sample of amniotic fluid is extracted from the sac of that surrounds the fetus. This fluid contains the fetal cells, is subjected to chromosomal analysis to detect gebetic disorders.  Fetoscopy is a procedure in which a fetus maybe directly observed to detect anatomical abnormalities in the developing fetus. In the medical context, if the diagnosis revelas that the fetus is afflicted with any errors on metabolism, chromosomal abnormalities and variants, and polygenic conditions such as spina bifida and anencephaly, the parents may use these data to decide whether or not to abort the fetus. THE ROLES OF PARENTS Virtue ethics gives us a special perspective on this question. It is the role of parents to make many decisions for their children, including the decision of life

and death (or nonexistence) prior to conception and both (assuming one is proabortion). One can construct a virtue ethics position that puts the decision completely in the hands of the parents. Thus, if a couple wishes to take on the burden of raising a defective child, it is morally acceptable. It must also be added that having such a child would entail duties that would go beyond those that parents of normal children would be required to assume. (Society may also gain a voice in the decision if the cost of raising the child is carried by society to any great extent. It is legitimate knowingly to bring a child into the world with serious defects when one also knows that one cannot pay the expenses?) Prior commitments to society must be made if one takes on a risk knowing that society may very well have to carry part or all of the economic burden of tending to a child’s health. But this perspective also puts the decision not to have children (or to abort) completely in the hands of the parents. This would mean that parents would have the right to abort a child with characteristics that many would consider acceptable. Take, for example, the case of the Down syndrome child. A couple may have a wish for a child who can share in their preference for a rather intellectual existence that is out of the question for any Down syndrome child. Many would accept the virtue ethics perspective when it indicates that parents may bring a defective child into the world if they wish but they would not accept the alternative side of the equation that permits parents abort children deemed unacceptable to them for less than extremely serious reasons. Clearly, one’s position on the abortion issue and the concept of parenthood comes into play. If one is inclined to accept abortion as a morally acceptable practice, then one would argue that it would be acceptable to refrain from conceiving such children but that it would not be acceptable to abort such child once conceived. THE POLITICS OF SCREENING Testing large populations (screening) has a checkered history. The early sickle cell anemia screening laws are instructive. The science of testing got caught up in a whirlwind of well-intentioned legislation in the early stages of the civil rights movements. It was a way of doing good for African Americans, a group of people who were becoming increasingly politically important. But legislators are not scientists. The legislation was often poorly written and sometimes directed at the wrong target populations. One consistent mistake was to refer to carriers of the sickle cell as disease. To have the disease one must have inherited the allele from both parents, whereas carriers have inherited the allele from only one parent. An unanticipated problem came up as a paternity discrepancies arose. If a child turned out to be heterozygous and neither parent was heterozygous, then it became clear that someone else was involved in the reproductive process. There are many instances where this sort of revelation has led to the breakup of otherwise stable families. Other mistakes occurred. The state of Virginia, for example, mandated that all convicts be tested for the disease, when inmates generally have few immediate plans for reproduction. Some states used testing methods that were not the most accurate available and thus achieved an unacceptably high number of incorrect positive results. Finally, there is the issue of confidentiality. Few states were prepared to protect the confidentiality of the patients. It was feared that discrimination in employment and insurance would result, or at the least at the social stigma would be attached to those identified as carriers. The lesson of the

sickle cell experience shows us that genetic screening requires wisdom, sensitivity, and most important, good science. We must not allow well-intentioned proposals to become practice without paying close attention to the procedures and the consequences. THE GENETIC CAUSES OF BEHAVIOR A family in Netherlands was found to have a mutation in a gene that coded for monoamine oxidase, a neurotransmitter that metabolizes adrenaline. The end effect of the mutation was that the affected individuals were constantly caught up in an adrenaline rush that signaled a flight-or-fight situation. The defect was on the X-chromosome; women in the family were generally carriers of the defect, and its expression came out in the men. Research into the family history showed that half the men were angry, hostile, and antisocial and possessed low IQs. Suppose that these men were involved in a higher incidence of violence and antisocial behavior than others in the community. In our time, we have been asked to consider a whole range of mitigating circumstances regarding criminal acts. The classic case involved the San Francisco politician Harvey Milk who was murdered. The now famous “Twinky defense” held that the murderer had consumed too many sugary pastry and that these led to his irrational act. How much should the fact that one was abused as a child, sexually molested by a religious leader, or were currently attempting to give up smoking mitigate in a criminal case? Could a person truly be guilty if he had a “criminal gene”? If we decide that it is the gene, not the criminal act, that we should focus on, what does this to do with the criminal justice system. Although we are not likely ever to be able to fine-tune the behavior of individuals, even crude genetic modification of behavior could pose risks. One can imagine that some political leaders might prefer passivity for most of their citizenry. Or a political leader might prefer extremely aggressive people to populate the armed forces. Behavior is likely to be polygenic and substantially environmental, so that genetic engineering of this sort is unlikely. Nevertheless, there are some scientists investigating the genetic basis of criminal behavior. Imagine a case in which the presence of a certain gene causes 30 percent of those with the gene to engage in criminal behavior. Also imagine that the other 70 percent turn out to be the leaders of societies. What would be the appropriate action, if any, to take under these circumstances? Some have suggested that all behavior is mediated through our genes and may be within our reach to modify. Just as we might find the “criminal gene,” which predisposes to a life of crime, or the “homosexual gene,” which leads to alternate sexual choices, it is possible that we might find the “religiosity gene’” which shapes our willingness to believe in God and to strive to live a moral life. How much are we willing to change? Genetic Interventions Genetic Interventions include intervention techniques such as genetic control, genetic therapy, and genetic surgery. People can now intervene in the biological process and control bad or defective genes that will most likely produce deformed or retarded children. One can cure (therapy), slice (surgery), splice (recombine) and repair genes in order to redesign (engineering) them for one’s own ends. Sperm and Zygote Banking

Sperm and Zygote Banking (SZB) is the freezing and preservation of sperm at low temperature, technically known as Cryopreservation. Some justifications for SZB include:  The preservation of the seeds of endangered animal species among the lower animals  Overcoming infertility among humans  Serving as fertility insurance for men who wish to undergo vasectomy, while hoping to retain their fertility in the future  Using sperm deposits for reseach on genetic diseases and reproductive processes  Furthering studies about sex selection for eugenic reasons There are now non-commercial frozen sperm banks in the United States connected with the university hospitals and clinics. Simultaneously, the number of commercial or semen banks is growing steadily. Ethical Issues  Couples, who are both carriers of complementary recessive genes, could prevent the birth of a potentially afflicted child by substituting their sperm or egg with those of a donor known to be free of such genes or simply requesting for a defective-free zygote.  Superior human beings could be bred by mating eggs and sperm from donors possessing certain desirable traits. The availability of frozen sperm and eggs would permit a high degree of selectivity among donors to assure such preferred matching. This preferential breeding of so-called superior individuals should be done to improve the genetic stock of human race.  Individuals or sperm donors whoa re found to be carriers of defective genes or genetically related diseases should be advised to undergo vasectomy or therapeutic or contraceptive sterilization.  When the pain of another person can be relieved or avoided, doing so is usually counted as a good; indeed, in most circumstances, failing to do so would be regarded as a moral wrong. Nonetheless, changes in genes that avoid the occurrence of disease are not necessarily made illicit merely because those changes also alter the genetic inheritance of future generations. By overcoming a deleterious gene in future beings, the beneficial effect of such changes may actually be magnified. It is of course true that mutation in the sex cells involves a change in the germ-line. This is going on all the time. At least 10% of all human fertilized ova (zygotes) contain one mutant gene not present in either parent.  The considerations about justice in altering the genes in a developing zygote or embryo. There is no absolute distinction between eliminating “defects” and "improving" heredity. Correction of mental deficiency can move imperceptibly into enhancement of intelligence, and remedies of severe physical disabilities into enhancement of prowess. Values then become highly controversial. In such circumstances the possibility is presented of enhancing the future child's potential rather than merely correcting specific defects. For some parents, the absence of certain desired traits in their offspring may seem as great a burden

as the presence of medically defined “defects” seems to others. It is the responsibility of the scientific community and other knowledgeable people to disabuse the public of the notion that such “positive” traits can at present be identified genetically, much less supplied at will in individual cases. More fundamentally against the day when the capability for “positive” genetic engineering may be at hand people should be encouraged to examine, in the light of ethical and religious beliefs, whether the use of such capabilities would be desirable. The transformation of procreation into a laboratory science and of offspring into products with interchangeable parts to be selected at will would bring about a major change in human self-understanding. The central concept of the human person as irreducible to its parts and the repository of an inalienable dignity have a close but very complex relationship with our ideas of liberty, responsibility and justice. A view of humanity as an object to be manipulated may reduce the mutual respect of people for each other and consequently increase the risk of additional exploitation of people by people. Many ethical and religious traditions endorse some human freedom to modify or transcend nature. But for us to change substantially the germ-line DNA is to directly alter the genetic foundations of the human. In what ways do we, by manipulating our genes in other than simple ways, change ourselves to something less than human? If we accept this power, do we have the wisdom to use it?  An increase in the means for achieving health and well-being is ethically desirable. It is important to assure, however, that new options do not become new dogmas. The choice to avoid a genetic condition in one's offspring by means of a germinal cell change should not become a legal requirement that such changes be made. Prospective parents are owed a full and informative explanation of the means available for promoting the genetic health of their children, as they see it, but neither society nor the medical profession ought to insist on a particular course of genetic engineering. Limitation of parental choice is acceptable, however, when needed to protect a child or child-to-be from an intervention known to be overwhelmingly harmful. HAZARDS OF RECOMBINANT DNA TECHNOLOGY The development of recombinant DNA technology in the mid-seventies triggered a sharp debate in the scientific community over the potential health hazards associated with this technology, a debate which initially restricted itself to the laboratory context. At first the technology involved the insertion of foreign DNA molecules into a laboratory strain of the common intestinal bacterium Escherichia coli (called K 12). Since these bacteria are relatives of organisms known to cause human disease, the introduction into E. coli of genes which specify biologically active proteins, such as insulin or human growth hormone, raised the possibility of the generation of novel forms of human or animal disease. In addition, the foreign DNA is often linked to bacterial plasmids (small DNA molecules residing in bacteria along with the chromosomal DNA). Many of the plasmids used confer resistance to antibiotics, which increased concern about the possibility of their selective increase and dissemination in the environment should they escape from the laboratory. Of special concern was the possibility that after escape, the

recombinant plasmids might become associated with strains of bacteria that cause disease. Concern with the potential human and environmental health hazards from pollution by genetically modified organisms has lessened considerably in the last year or two, due to  further experience with recombinant DNA technology  the development of guidelines and procedures for carrying out the research  development of physical and biological containment procedures (i.e. the use of enfeebled host strains) to minimize release or survival in the environment  the assessment that E. coli K12 strains are themselves unlikely to survive in the human gut or the environment  the assessment that genetically engineered organisms are at a selective disadvantage compared to naturally occurring organisms. As a consequence of these arguments it is now generally claimed by molecular biologists that the risks of recombinant DNA technology are minimal. This development has removed one of the main barriers to the commercial exploitation of the technology. Though many scientists involved in these technologies disagree with these assessments, some do not believe that survival and risk assessment experiments carried out on one strain of E. coli can accurately serve to predict the behavior of the great variety of genetically modified organisms that can be expected to be generated in future applications of recombinant DNA technology. In addition the pressures of commercial exploitation may well undercut the application of guidelines carefully developed in the academic context. Since the genetic modifications are of limited extent, we do not believe that epidemic spread is a realistic concern. On the other hand, within the developing nations many "conventional" bacterial infections remain major human health hazards whose epidemic spread is still common. In these settings extra care with respect to genetically modified organisms will be required, for example the use of enfeebled host organisms may be suggested. Sex Change Operations There are two types of sex operation:  Male to female sex operation The testicles are removed, the penis amputated and an artificial vagina is constructed using parts of the penis. The breasts are enlarged with silicone implants and the Adam’s apple is reduced in size.  Female to male sex operation The uterus and the ovaries are removed, the breasts are reduced in size and an artificial penis is simulated. Surgeons implant a hydrauline system in the artificial phallus to enable it to mimic erection. To develop the appropriate secondary sec characteristics, both males and females are given sex hormones of their new gender. Despite of the sex change operations, however, the true biological sex is not change. The sex change is only external.

For transsexual, they can undergo sex change operation in their desired sex, either female or male. Moral Issues and Justifications The moral issues surrounding sex change operations are varied. For one, sex change operation should be resorted to only when psychiatry fails to cure the person concerned. A thorough screening procedure should be conducted to determine whether or not a certain transsexual would benefit the operation. This hold true for hermaphrodite, who has both male and female external sexual organs at birth, nut biologically belonging to one of the two sexes. However, he or she cannot, father nor bear a child. The very phenomenon of hermaphroditism can sometimes be remedied through surgical interventions so that the hermaphrodite can live and function according to his or her chromosomal sex. Today, however, we must face the questions:  Is it right for us to become our own creators?  Can we and should we remake human nature?  Can we hasten the processes of evolution by eliminating our troublesome wisdom teeth or our appendix by genetic engineering?  Might we in the future greatly reduce the complexities of the digestive system by a more effective intravenous method?  Might we sterilize all human beings and reproduce artificially?  Might we also expand the human senses so as to make it possible for us to see or hear beyond the present or upper range of sight and vision.  Might we influence embryological development by drugs so as to mold the development of the phenotype (the actual body) while not changing the genotype (inherited characteristics)?  May we employ genetic engineering to produce any gene combination in the fertilized ovum that we desire, thus creating human beings by "recipe?" The basic ethical issue is the question of the extent of our dominion over nature. This is a classical way of posing the issue. However, the response to this question by many people is frequently influenced by the Greek image of God as a jealous monarch who becomes angry when Prometheus infringes on his prerogatives. Thus they limit human creativity unnecessarily. Others would view attempts to improve on man as either an insult to the work of the creator whose masterpiece is man, or as a fatal temptation of pride, because it is a sign that man is trying to replace God. Today, however, in considering radical human development, we need to stress two points: (1) God is a generous Creator who in creating us also called us, by the power of intelligence to share in his creative power. Consequently, God does not want the talents he has given us to lay fallow, but encourages us to improve on the universe He has made; (2) Such improvement is possible because we realize that God has made an evolutionary universe in which man has been created through an evolutionary process that is not yet complete. Thus God has called us to join with him in bringing the universe to its completion and in doing this He has not made man merely a workman to execute His orders, or to add trifling original touches to his

own, but has made man a genuine co-worker and encourages him to exercise real originality. Someday we may also be able to eliminate genetic disease and even advance human health eugenically. However, we must remember that our human creativity depends upon our human brain. Any alteration of man that would injure the brain and hence his very creativity would indeed be a disastrous mutilation, especially if this were to be transmitted genetically, thus further polluting the gene pool with defects which might be hidden and incalculable. Generally speaking, our knowledge of this wonderful brain is still in its beginnings. The complexity of the brain is beyond any other system which we can imagine, and this complexity is reduced to a relatively very small organ capable of self-development from the embryo and of self-maintenance, but not of selfrestoration. Our brain may be near the limit of complexity and integration possible in an organic, living system. In this case any radical improvement may be illusory, while even slight alterations may be very damaging, thus, to say the least, radical attempts to alter the structure of the human brain must be viewed with the utmost caution, since the risk is very high that we will only produce persons of lowered intelligence. Ambiguities line the road ahead and there is the possibility of error on all sides. However, if science and technology are to serve the welfare and fulfilment of the broader human society, we must maintain continued discussion, dialogue and debate on all aspects of these powerful new technologies. Of special concern is the reality that the inequitable distribution of power, influence and knowledge increases the possibility of the misuse of technology.

I. INTRODUCTION •

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Ten to fifteen percent of married couples are unable to have children. Surrogate mothers are not a new solution to the old problem of not being able to reproduce an offspring. • Surrogacy has been around a long time and dates back to biblical times. An interesting bible scenario is Sarah, the wife of Abraham. Sarah could not have children in the beginning. She gave her handmaid, Hagar, to her husband Abraham to produce them a child. The method used was copulation. The outcome in this arrangement did not prove to be a productive one and ended in disaster. In this scenario the

spouse became jealous, the surrogate became proud and refused to give up the identity of the child and consequently the spouse had both her and her child ousted. II.

MEANING •

Surrogacy refers to an arrangement whereby a woman agrees to become pregnant for the purpose of gestating and giving birth to a child for others to raise. She may be the child's genetic mother or not, depending on the type of arrangement agreed to.

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Latin “Surrogatus” (substituted), means appointed to act in the place of.

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A surrogate mother is a woman who carries a child for a couple or single person with the intention of giving that child to that person/people once the being is born (also called surrogate pregnancy).

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Surrogate motherhood or surrogacy is a biomedical technique whereby a fertilized ovum is implanted into the uterus of another woman who will carry the baby to term either as a favor or for a fee. It is precisely because of the financial arrangement involved that this procedure if often referred to as the “womb for hire”, “rent a womb” or “uterus for rent” business. In such cases, a woman who can produce a normal ova, but whose health would be endangered by pregnancy, can have her ovum fertilized by her husband’s semen either in vitro or in vivo and after three or five days of growth the embryo could be transferred to the uterus of a healthy woman who, either out ot friendship or for payment, would carry it to term. After delivery, per agreement, she would give the baby to the couple who are the genetic parents of the child.

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Contracted motherhood agreements can be divided into two categories: commercial and non-commercial, or “altruistic.” a. Commercial contracted motherhood arrangements -are those in which the party seeking a child agrees to pay a fee to the surrogate beyond the cost of her medical needs. Is the practice where a woman carries and conceives a baby for other people who commission her to do so, usually a wife and husband. The practice is consolidated by the transaction of money. Typically, impregnation of the surrogate mother occurs through artificial insemination. b.

In contrast non-commercial or “altruistic” contracted motherhood arrangements -are those where the surrogate agrees to receive no payment or reward, although it is rare that a total non-commercial agreement is ever made as it is expected that the commissioning party will pay

the pregnant woman’s medical bills. It is often between parties who are family or friends prior to the arrangement. •

In some cases it is the only available option for a couple who wish to have a child that is genetically related to at least one of them. People who choose surrogacy may be: • single men or gay male couples • heterosexual couples who are unable to have children due to a difficulty suffered by either partner. • single women or lesbian couples who don't want to go through pregnancy or artificial insemination • A female, married or otherwise, who is infertile for some reason. These problems may include absent or poorly functioning ovaries, an absent or malformed uterus, a maternal disease which precludes pregnancy but not motherhood, recurrent pregnancy loss, or repeated IVF implantation failures.

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It is same as selling babies. Proponents would argue that we do not treat children as property, so how can we possibly sell what we do not own? Surrogate mothers are merely vessels who, by offering their services, shoulder the risk of childbearing and therefore deserve monetary compensation for this risk they take. By accepting this monetary compensation, surrogate mothers, by contract, relinquish any bond they have with the delivered offspring. Ergo, surrogacy is a purely commercial trade of putting reproductive services up for sale. So goes the argument that if men are allowed to sell sperm, then why can't women sell the services of their wombs? But then again, the debate is circular. Do we really own our sperm and ova? In the form of germ cells, we may think we preside over their ownership ultimately, we do not own the persons that they become.

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Did you know? Surrogate mothers in the US earn a median of US $20,000 for their services. By contrast, surrogate mothers in China charge an average of US $12,200 for their services

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Who should be surrogate? Statistically, mostly educated women with 13 or more years of education. It was not primarily a money factor that led them to make the decision. Mostly these women are employed and are not undergoing financial difficulties. They are predominately Catholic or Protestants. The women want the intending family to enjoy the special love of a child and the wholesome gratification of their own child(ren). The surrogate is empathetically driven to share what they have, and relieve some of the social stigma of not being able to produce a child. Some stresses associated with being a surrogate are: insemination (over several months), pain, unpleasant side effects, depression, sleep disturbance, guilt difficulty remaining unattached, intrusive or aloof couples,

relinquishing, etc. It takes a special person to become a surrogate. If you cannot adhere to the demands no matter how much a person may wish to help out, don’t think about it!!! Surrogacy is often seen as an alternative to adoption, although adoption may be part of the process. Surrogacy occurs when a woman who is not pregnant agrees to bear a child for another/others who will parent the child. What differentiates surrogacy from designated adoption - where pregnant and adopting parents connect with one another prior to the birth and make an adoption plan - is that the surrogate, the woman who will bear the child, is not pregnant at the time a surrogacy agreement is reached.

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III. •

HISTORY This topic falls under the broader heading Motherhood/Fatherhood/Families. The practice of surrogacy relates to this broader topic because it has and continues to change the way we understand the institution of the family. Traditionally, western understanding of kinship has been related to either blood or marriage relations. A child born out of a surrogacy agreement may or may not be related, in either of these ways, to the people who will raise the child. As the dynamic of the modern family changes and more things become accepted, it is important that surrogacy be understood as an option for some couples who may not be able to acquire children naturally. For example, lesbian and gay married couples may wish to have a child but cannot do so naturally. These couples may commission a surrogate to carry a child for them that will still be tied to them biologically in some way. A woman who holds a full time job may not have time or be able to become pregnant because of some ascetic standard she must maintain at work. She may seek out a surrogate to do the nine-month carrying and birthing for her but is this “ascetic standard” applied unequally to only women in the workplace a good enough reason for surrogacy to exist? Looking at the evolving family and roles of motherhood will allow us to examine this. Baby M Case - The first trial that arose from a surrogacy agreement in New Jersey in 1988. Surrogate mother, Mary Beth Whitehead, fought an unsuccessful court battle for custody of the child she was paid to bear for another couple.

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IV.

TYPES

There are two types of surrogacy: 1. Traditional • Involves the surrogate mother being (AI) artificially inseminated with the sperm of the intended father or sperm from a donor when the sperm count is low. • In general, traditional surrogates do not have to be on any special medications. They keep track of their own menstrual cycle and time the inseminations around when they naturally ovulate. In some

cases, intended parents and their surrogate will choose to use mild fertility drugs, such as Clomid, to fine-tune the timing of ovulation or increase the chances of twins. Through charting their Basal Body Temperature, watching their cervical mucous, and using ovulation predictors or fertility monitors, and/or through ultrasound monitoring by a clinic, the surrogate can pinpoint when she's most likely to ovulate and do the inseminations to coincide with this. 2. Gestational •

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A gestational carrier is a more complicated, involved, and expensive process. Eggs are harvested from the wife, fertilized in the laboratory with the husband's sperm and the resulting embryo is then transferred into the gestational carrier's uterus at a specific time during the cycle. Most centers give the gestational carrier hormones to help prime and time the uterus for conception. In gestational surrogacy, the surrogate mother has no genetic ties to the offspring. Eggs and sperm are extracted from the donors and in vitro fertilized and implanted into uterus of the surrogate. This is an expensive procedure. Again, the unused embryos may be frozen for further use if the first transfer does not result in pregnancy. Using in vitro fertilization (IVF), the Intended Parents produce an embryo that can then be transplanted into the surrogate mother for her to gestate and give birth to after nine months. In gestational contracted motherhood the pregnant woman makes no genetic contribution to the child, however she is the child’s birth mother. Gestational surrogacy is an expensive process, with each IVF cycle costing thousands of dollars. In the case of a failed transfer, there is often a wait of several months before one can attempt another transfer, and there is a higher miscarriage rate among pregnancies achieved this way than through traditional means. The increased legal benefits of gestational surrogacy and lack of a

Traditional done via artificial insemination, with the surrogate using her egg and another man's sperm. done via In Vitro Fertilization (IVF), where fertilized eggs from another woman are implanted into the surrogate's uterus. the downside to traditional surrogacy is the genetic link between the surrogate and the baby she carries

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Gestational done via In Vitro Fertilization (IVF), where fertilized eggs from another woman are implanted into the surrogate's uterus. unlike IVF, where it's often months they cannot imagine being able to relinquish a child that they are genetically related to, or they don't feel comfortable with their children having half siblings out and about in the world. much more expensive and complex medical process; however, there is one thing it offers that many intended parents can't pass up: the chance to parent a child that is genetically their own. Through IVF, a surrogate can carry embryos that have been created from the eggs of the baby's intended mother and sperm of his intended father. The eggs are retrieved from the intended mother and fertilized with the sperm, allowed to grow, then transferred into the surrogate's uterus through a catheter (or frozen for later transferring)

genetic bond, however, are often strong selling points for the intended parents and surrogates who choose this route.

V.

CASES

1. One such case involved Cripinia Baldovino, who immigrated to the United State from the Philippinse in 1979 and is now a registered nurse, and M<ark Calvert, an insurance underwriter. They were married in 1982. two years later, Cris (or Pinning) underwent a hysterectomy in which her uterus had to be removed but not her ovaries. She produced eggs though she could no longer bear a child. Stil;l the couple yearned to have children and considered adopting. Mark, however, wanted some genetic link ( People’s Tonight 1991:11). In the autumn of 1989 Cris met a coworker named Anna Johnson at a hospital in Santa Ana, California. The latter was an ex-marine and the single parent of a daughter, Erica. From all account, Anna responded enthusiastically when the delicate subject of surrogacy was proposed by Mark and Cris. In a private agreement signed on January 15, the fee was set at $10,000, plus medical expenses and monthly allowance, all to be paid on a set schedule. Two years later, the Calvert’s underwent in vitro procedures at a local clinic, and on January 19 three of the eggs were implanted. On February 2, tests showed that Anna Johnson was indeed pregnant. The story, however, did not end with the birth of a baby boy, named Christopher Michael. Relations between the Calverts and the surrogate mother turned sour. Anna acused the Calverts of breach of contract and the Calverts contended that Anna repeatedly demanded payments ahead of schedule. Johnson filed a lawsuit for custody of the baby on August 13. While the trial was spending, Christopher Michael was taken home by Cris and Mark while Anna was allowed visits twice a week. In the end, Judge Richard Parslow of the Orange Country Superior Court ruled that the surrogate mother in this case had not been sufficiently “bonded” with the child during pregnancy to warrant parental rights. In handing down this decision, Parslow urged California lawmakers to establish ground rules a governing the growing practice of surrogate. 2. Another historic case of surrogacy was reported on October 21, 1991. Mrs. Arlette Schweitzer, a 42-year old mother from Aberdeen, South Dakota, was the first American woman to give birth to her daughter’s children. A south African woman to give birth to triplets in 1987, acting as a surrogate mother for her daughter (People’s Tonight 1991:6) Mrs. Schweitzer’s daughter Christa, 22-married to Kevin Uchytil was born without a uterus, so she could not carry a child, though she could produce eggs. Mrs. Schweitzer was implanted with eggs that had been removed form her daughter and were fertilized with Uchytil’s sperm. Later, Dr. William Phipps, who performed the fertilization and implantation, determined that Mrs. Schweitzer became pregnant with her own grandchildren. Chelsea and Chad, the twins, were born by Caesarean section, five weeks prematurely.

The Calvert-Johnson case has renewed a debate among physicians, lawyers and medical ethicists as to whether surrogacy is a compassionate solution to the heartbreak of infertility or whether it is no more than a exploitive, high-tech form of baby farming. In the last decade, between 1000 and 2000 babies have been born in the United States through surrogate contracts. Fertilization and implantation procedure cost about $7000, most of which is not covered by insurance. For the most part, surrogacy has fulfilled the dreams of parenthood for infertile persons. But in some 5 to 19 percent of such cases, the process ends in legal wrangling and heartbreak for one or both sides VI.

ISSUES

Those who advocate the practice of surrogacy claims that it is a moral and just act since people who are burdened by the frustration of not being able to procreate are actually being addressed. With surrogacy, infertile couples are actually provided the joys of parenthood. Likewise, it is also said that surrogacy does not necessarily have to be equated with money. With the aid of laws and existing public policies regarding it, it is also claimed that the possibility of commercialization and the development of a market for it can be controlled and at the same time access to the said reproductive technology is made possible for anyone who would like to avail There are three types of mothers, the genetic mother (provides the egg and ½ of the genetic code ñ 23 chromosomes), the gestational mother (she carries the fetus inside her body), and the social mother (contributor to the raising and care of the child). Each is important for the well-being and development of the child. Surrogacy is not a simple arrangement; it is extremely complex. The relationships can be stressful, overwhelming, and intense. Patience and perseverance are a must. Both the surrogate and the infertile couple should obtain legal counsel before agreeing to and signing a contract. It is in their best interest to know how the law addresses certain aspects of surrogacy as it pertains to their particular interest. Women should have complete freedom in the decision to have an abortion. Surrogate parenting should be permitted as long as the child is not treated as a commodity to be delivered for the payment of a price. Parents and children do not necessarily have to be genetically related to each other. There is nothing wrong with changing the traditional concept of family. Choices related to marriage and childrearing should be left to each individual, even if everyone stops having children and humankind is in danger of extinction. There is no reason to prohibit human reproductive cloning if the rights and well being of the cloned child can be guaranteed. Much of the controversy over surrogacy is created by the fact that money is involved. Many in the anti surrogacy camp are concerned about the possible exploitation of women. Most surrogate mothers are in the middle or lower classes while most intended parents are from the middle and upper classes. Many are

concerned that money will motivate women to become surrogates out of poverty. There are those that believe surrogacy is baby selling which is what laws have been set up prevent. They make it illegal for adopters from ever paying birth mothers a fee which prevents the giving of babies away to the highest bidder. Those arguing in favor of surrogacy compensation state that surrogacy and adoption are entirely different in that in adoption the birth mother finds herself in a life crisis and are extremely vulnerable whereas a surrogate mother makes the choice to partake in an arrangement with certain known risks. Many feel that the payment given to a surrogate is not for the child but for the pregnancy and expenses incurred as a result and that the payment should be given regardless of health of the child. Some people feel payment should be made regardless if the surrogate relinquishes all of her parental rights. Many feel the money is a token payment for all the hard work involved in the arranging, medical appointments, health risks, emotional challenges, time missed at work, etc. They believe that if payment to a surrogate mother is made illegal surrogacy will be no longer be possible as there are very few women willing to themselves pay for the many costs surrogacy directly and indirectly incurs. Currently many state legislatures are baffled with how to regulate surrogacy so that people are free to reproduce in the fashion they see fit, a right protected by the constitution, while protecting women and children's rights at the same time. Today the issue of surrogate parents, and sperm donors continues on today because by sperm donation parents can choose physiological aspects the want their children to have, the parents may both be the child’s biological parents, in the future they must tell the child about how he/she was born thus resulting in more tension. (sperm banking) VII.

ETHICAL OR NOT

Baby selling is unlawful in every state in the United States; however, desperate couples and unscrupulous individuals apparently continue to risk the legal penalties. It is extremely risky for a couple to try to buy a baby because of the distinct possibility of that adoption being overturned at a later date. In addition, the fear that state or federal authorities may eventually "catch up" with them can generate intense anxiety in the adopting parents or persons who buy the infants; however, unscrupulous individuals involved in baby selling will continue to operate as long as there is a profit to be made. Surrogacy opponents are concerned about the money. Critics feel that planning to bear a child for a couple (or single person) in exchange for a large sum of money is baby selling and should be banned. Surrogacy opponents are concerned about many issues, especially the mother's right to change her mind about releasing the baby after the child's birth. They argue that she should have the same right to choose to parent the child as she would if she were a mother considering placing her child for adoption.

Surrogacy Versus Adoption The primary difference between surrogacy and adoption is that in nonrelative adoptions, the adoptive father is not the biological father nor has he contracted to create a child. Instead, actions to adopt did not commence until after the child was conceived. Surrogacy is a planned pregnancy, usually for money; adoption is a humanitarian solution to an unplanned pregnancy. Another difference is that every state has an adoption law, but laws on surrogacy are still evolving. In addition, in every state, if a pregnant woman who is considering adoption for her baby changes her mind about adoption before she signs consent (or within a certain time frame of signing consent, depending on state law), she may legally choose to parent her baby. Surrogate mothers often do not have the same choices over children genetically related to them, as do birthmothers considering an adoption plan. The road to surrogacy is not an easy one. Things may go wrong as one cannot foresee the possibility of the surrogate keeping the child, the child being still born or even dying at birth. However, it’s an option some childless couples are willing to consider despite the odds.

Euthanasia is defined as the intentional killing of a dependent human being, by act or omission, for his or her alleged legal benefit. The key word is “intentional.” If death is not intended, then it is not an act of euthanasia. “Euthanasia” derives from the Greek words Eu which means good and thanatos which means death. It etymologically signifies “good death,” a pleasant and gentle death without awful suffering. Euthanasia may be defined as an action or omission that by its very nature, or in the intention, causes death, for the purpose of eliminating whatever pain.

Nature of Euthanasia Francis Bacon used the word euthanasia for the first time in1623. He affirmed “that the task of the physician is to bring back health, to mitigate suffering and pain mot so much in that this mitigation can lead to a cure, but that it may also serve to procure a peaceful and easy death”. The word is used today to signify that procedure which facilitates death and liberates one from all types of pain, provoking the death of the hopeless patient and suppressing ‘useless” human lives. People in ancient times did not usually have scruples to eliminate in any way those individuals considered useless to society. Plato, for example, stated:

“Discipline and jurisprudence shall be established by the state; this will be limited to caring for healthy citizens. The unhealthy are left to die”. A laudable exception is found in the Hippocratic Oath: “I will give poison to no one when asked; nor will take the initiative of suggesting such act.”

Death and Human Dignity The issue of death has become more complicated than it used to be because of ethical conflict. The moral issue of euthanasia revolves around the preservation of human dignity in death even to the individual’s last breath. This issue has both its positive and negative sides. The positive argument states that euthanasia aims to preserve human dignity until death. Not only does one have a duty to preserve life but one also has the right to die with dignity. To die with dignity means that one should be able to make the decision to die when dying would be better than to go on living with an incurable and distressing sickness. The negative argument, on the other hand, declares that euthanasia erodes human dignity because it means cowardliness in the face of pain and suffering. People who have faced the realities of life with courage die with dignity. Whereas the positive side insists that mercy killing preserves human dignity, the negative side claims the opposite since the act hastens the death of an individual.

Classifications of Euthanasia Euthanasia maybe classified as follows: Suicidal euthanasia. It is called as such when the subject himself (alone or with the help of other people) resorts to lethal means to interrupt or suppress his life. Therefore it is done with the subject’s consent. Homicidal euthanasia comes in two forms:  Euthanasia for piety or pious homicide, is performed to liberate a person from a terrible disease, e.g., agonizing senility. Today this type of euthanasia is presented as the most “reasonable” compared to other types. It prescribes “Death ithout suffering” for hopeless patients, saving them from further “useless”, “unnecessary” suffering.  Social or eugenic euthanasia seeks to eliminate “lives devoid of vital value” or to “purify the race”. Ortothanasia- Etymologically, the word ortothanasia means passive death. The subject is left to die by omitting any medical assistance. But for some authors, this terminology has another meaning which is considered ethical. Positive and negative euthanasia. Positive euthanasia provokes death through sdequate intervention (equivalent to suicidal and homicidal euthanasia). On the other hand, negative euthanasia results when medical support is omitted. Active (Direct) euthanasia and negative (Indirect) euthanasia. There is a growing tendency today to impose the terminology, “active or direct euthanasia” which actually means to procure death in order to eliminate

pain. “Negative or indirect euthanasia,” on the other hand, is not strictly euthanasia since it seeks to alleviate a patient’s suffering with the accompanying risk of shortening his life. Painless death is not euthanasia in the strict sense. Drugs are administered to modify or suppress pain and not to provoke death. (Painless death is inappropriately termed as euthanasia lenitive). Neither can we call euthanasia the acceleration of death when it is due to drug therapy which shortens life but isnot intended for this end. Voluntary euthanasia means that a person requests to be killed. Non-voluntary euthanasia is when a person did not request and gave no consent to be killed. Euthanasia by action means intentionally causing a person’s death by performing an action such as by giving a lethal injection. Euthanasia by omission means intentionally causing death by not providing necessary and ordinary (usual and customary) care such as food or water. What Euthanasia is NOT There is no euthanasia unless the death is intentionally caused by what was done or not done. Thus, some medical actions that are often labeled “passive euthanasia” are not euthanasia since they lack the intention to take life. These acts include not commencing treatment that would not provide a benefit; withdrawing treatment that has been shown to be ineffective, too burdensome or is unwanted; and the giving of high doses of painkillers that may endanger life, when they have been to be necessary. All those are part of good practice, endorsed by law, when they are properly carried out. What is the difference between Euthanasia and Assisted Suicide? One way to distinguish between euthanasia and assisted suicide is to look at the last act- the act by which death occurred. Using this distinction, if a third party performed the last act that intentionally caused a patient's death, euthanasia occurred. For example, giving a patient a lethal injection or putting a plastic bag over her head to suffocate her would be considered euthanasia. On the other hand, if the person who died performed that last act, assisted suicide took place. Thus it is assisted suicide if a person swallowed an overdose of drugs provided by a doctor for the purpose of causing death. It is also assisted suicide if a patient pushed a switch to trigger a fatal injection after the doctor inserted an intravenous needle into the patient's vein. Persistent Vegetative State A persistent vegetative state (PVS) is a condition of patients with severe brain damage in whom coma has progressed to a state of wakefulness without detectable awareness. There is controversy in both the medical and legal fields as to whether this condition is irreversible. The syndrome was first described 1940 by Ernst Kretschmer after whom it also has been called Kretschmer syndrome. PVS is also known as cortical death, although it is not the same as coma or brain death. Patients in a persistent vegetative state are usually considered to be unconscious and unaware. They are unresponsive to external stimuli, except, possibly, pain

stimuli. Unlike coma, in which the patient's eyes are closed, patients in a vegetative state often open their eyes. They may experience sleep-wake cycles, or be in a state of chronic wakefulness. They may exhibit some behaviors that can be construed as arising from partial consciousness, such as grinding their teeth, swallowing, smiling, shedding tears, grunting, moaning, or screaming without any apparent external stimulus. Many patients emerge from a vegetative state within a few weeks, but those who do not recover within 30 days are said to be in a persistent vegetative state. The chances of recovery depend on the extent of injury to the brain and the patient's age, with younger patients having a better chance of recovery than older patients. Generally adults have a 50 percent chance and children a 60 percent chance of recovering consciousness from a PVS within the first 6 months. After a year, the chances that a PVS patient will regain consciousness are very low and most patients who do recover consciousness experience significant disability. The longer a patient is in a PVS, the more severe the resulting disabilities will be. Rehabilitation can contribute to recovery, but many patients never progress to the point of being able to take care of themselves. Few people have been reported to recover from PVS. Some authorities hold that PVS is, in fact, irreversible, and that the reportedly recovered patients were not suffering from true PVS. This conclusion is in dispute, however, as there have been cases like that of a man in Australia who was closely followed for years before suddenly 'waking up.' In the United States, it is estimated that there may be between 15,000-40,000 patients who are in a persistent vegetative state, but due to poor nursing home records exact figures are hard to determine Defining Death When is a patient considered to be legally dead, what type of treatment can be withheld or withdrawn? Most cases dealing with euthanasia speak of the necessity for a physician to diagnose a patient as being either in a persistent vegetative state or terminally ill. Traditionally the definition of death adopted by the courts has been according to Black's Law Dictionary: “cessation of respiration, heartbeat, and certain indications of central nervous system activity, such as respiration and pulsation.” At present, however, modern science has the capacity to sustain vegetative functions of those in irreversible comas. Machinery can sustain heartbeat and respiration even in the face of brain death. It is mow generally accepted that the irreversible cessation of brain function constitutes death. Ethicists who advocate the prohibition on taking action to shorten life agree that “where death is imminent and inevitable, it is permissible to forgo treatments that would only provide a precarious and painful prolongation of life, as long as the normal care due to the sick person in similar cases is not interrupted. Some courts hold that artificial nutrition can be withheld from a patient who is unable to converse or feed himself or herself. Unequivocal proof of a patient's wishes will suffice when the decision to terminate life support is at issue. Factors for determining the existence of clear and convincing evidence of a patient's intention to reject the prolongation of life by artificial means include: ➢ the persistence of statements regarding an individual's beliefs ➢ the desirability of the commitment to those beliefs ➢ the seriousness with which such statements were made ➢ the inferences that may be drawn from the surrounding circumstances

Assisted Suicide: A Profound Question The issue of assisted suicide presents profound questions of medicine and medical ethics, theology and sociology, and numerous other far-reaching public policy issues. These are precisely the kinds of issues in which public input is vital, and courts are simply not equipped to conduct the type of comprehensive, broadbased hearings at which witnesses and experts on all sides of the question would testify about the broader policy ramifications of creating and regulating a right to assisted suicide. Advance Directives Advance directives, in the form of a “living will” or “durable power of attorney” allow the patient to state in advance the kinds of medical care that he or she considers acceptable or not acceptable. The patient can appoint an agent, a surrogate decision maker, to make those decisions on his her behalf. A patient should be asked at the time of admission if he or she has an advance directive. If a patient does not have advance directives, the organization should provide the patient with information about an advance directive and the opportunity to executive a directive. Living Will A living will, also called will to live, advance health directive, or advance health care directive, is a specific type of power of attorney or health care proxy or advance directive. It is a legal instrument that usually is witnessed or notarized. These documents state: • That the principal is appointing an individual to direct their health care decisions should the principal be unable to do so (e.g. called "power of attorney for health care"), or Specific directives as to the course of treatment that is to be taken by caregivers, or, in particular, in some cases forbidding treatment and sometimes also food and water, should the principal be unable to give informed consent ("individual health care instruction") due to incapacity. As the name suggests, the term "will to live", as opposed to the other terms, tends to emphasize the wish to live as long as possible rather than refusing treatment in the case of serious conditions. Durable Power of Attorney A power of attorney or letter of attorney in common law systems or mandate in civil law systems is an authorization to act on someone else's behalf in a legal or business matter. The person authorizing the other to act is the "principal" or "grantor (of the power)", and the one authorized to act is the "agent" or "attorneyin-fact" [AIF]. The attorney-in-fact acts "in the principal's name" -- for example, by signing the principal's name to documents. The power of attorney (often called "POA" for short) may be verbal—such as asking someone else to sign your name on a cheque because your arm is broken—or may be in writing. Many institutions, such as hospitals, banks and, in the United States, the Internal Revenue Service, require a power of attorney to be in writing before they will honor it, and they usually want to keep an original for their records. •

Withdrawal of Treatment

Withdrawal of treatment is a decision not to initiate treatment or medical interventions for the patient. When death is imminent and cannot be prevented by available treatment, it is morally permissible to withhold treatment that can yield only a precarious prolongation of life that may involve a great burden for the patient or family. Palliative care should be encouraged in end-of-life situations. Withdrawal of treatment should be considered when: (1) the patient is in terminal condition and there is a reasonable expectation of imminent death of the patient; (2) the patient is in a non-cognitive state with no reasonable possibility of regaining cognitive function, and/or restoration of cardiac function will last for a brief period. Do Not Resuscitate Orders A do not resuscitate (DNR) order is another kind of advance directive. A DNR is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. (Unless given other instructions, hospital staff will try to help all patients whose heart has stopped or who have stopped breathing.) You can use an advance directive form or tell your doctor that you don't want to be resuscitated. In this case, a DNR order is put in your medical chart by your doctor. DNR orders are accepted by doctors and hospitals in all states. The Dying Person's Bill of Rights I have the right to be treated as a living human until I die. I have the right to maintain a sense of hopefulness, however changing its focus may be. I have the right to be cared for by those who can maintain a sense of hopefulness, however changing this may be. I have the right to express my feelings and emotions about my approaching death in my own way. I have the right to participate in decisions concerning my care. I have the right to expect continuing medical and nursing attention even though “cure” goals must be changed to “comfort” goals. I have the right to not die alone I have the right to be free of pain I have the right to have my questions answered honestly I have the right to retain my individuality and not be judged for my decisions, which may be contrary to the belief of others. I have the right to expect that the sanctity of the human body will be respected after death.

I have the right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.

Overview AIDS began as a mutant virus that was picked up from a species of African monkey and transferred to humans. Only about two decades after AIDS was first recognized, HIV infection has become a global pandemic. An estimated 20 million AIDS death have occurred worldwide, and over 40 million adults, children, and infants are infected with HIV. It is the leading cause of death in sub-Saharan Africa and in many of the largest cities in the United States and Europe. Worldwide, probably 14,000 new HIV infections occur each day. The global impact of AIDS in the 21st century dominates ethical and policy debates. This entry discusses ethical issues regarding HIV testing, testing, and research. Key issues analyzed include confidentiality, informed consent, end of life, research design, conflict of interest, vulnerable populations, and vaccine research. Ethical Principles There are three widely recognized principles in bioethics that apply to both clinical and research ethics: respect for persons, beneficence, and justice. a. Respect for person entails respecting the decisions of autonomous persons and protecting persons who lack decision-making capacity. It also imposes an obligation to treat persons with respect by maintaining confidence and keeping promises. b. Beneficence imposes a positive obligation to act in the best interest of patients or research participants. It is understood to require that the risks of research be minimized and that the risks be acceptable in light of the potential benefits of research. c. Justice requires that people be treated fairly. It is understood to require that benefits and burdens be distributed fairly within society. In the Philippines Republic Act no. 8504 was formulated and enacted. This is an act promulgating policies and prescribing measures for the prevention and control of HIV/AIDS.

CLINICAL ETHICS

Duty to Treat •

The limited risk to the practitioner would not provide a suitable rationale to refuse to treat patients with known HIV infections.

Professional Duties in an Epidemic 1. to provide service consistent with skills 2. to obtain skills if needed by patient population as consistent with scope of practice 3. to provide accurate and up-to-date information 4. to promote the patients best interest regardless of personal feelings toward patient or their disease entity  According to the Nursing Code of Victims of Communicable disease, “provision of services with respect to human dignity and the uniqueness of the client unrestricted by considerations of social or economical status, personal attributes, or the nature of the health problem. Guidelines or Criteria to Determine whether a Practitioner has a Moral Duty to Treat or whether the Decision is Left as a Moral Option 1. The patient is at significant risk of harm, loss, or damage if the practitioner does not assist. 2. The practitioner’s intervention or care is directly relevant to preventing harm. 3. The practitioner’s care will probably prevent harm, loss, or damage to the patient. 4. The benefit the patient will gain outweighs any harm the practitioner mught incur and does not present more than a minimal risk to the health care provider.

Confidentiality  All medical information generally is considered confidential and protected under the law.  “All health professionals, medical instructors, workers, employers, recruitment agencies, insurance companies, data encoders, and other custodians of any medical record, file data, or test results are directed to strictly observe confidentiality in handling of all medical information, particularly the identity and status of persons with HIV.” (Article 6, Sec.30 of R.A. 8504) Confidentiality is based on at least three foundations:

 The duty-oriented acceptance of a personal right of self-determination, which requires the control over privacy and personal information.  The utilitarian view that if confidentiality were commonly breached, the patients would be deterred in seeking medical assistance for problems with sensitive or personal aspects.  The long-held, virtue-oriented belief among health care providers that a special relationship exists between a practitioner and client that calls for the tacit agreement of confidentiality and mutual trust. Exceptions to the legal and ethical obligation to maintain confidentiality of HIVrelated information are as follows:  Health care providers have a duty to report HIV infections and AIDS cases to public health authorities.  Specific authorization from patients to disclose HIV-related information to third parties.  Health care providers may not warn the sexual or drug-using partners of infected patients without first informing the patient of the intended disclosure.  “When informing other health care workers directly involved or about to be involved in the treatment of care of a person with HIV/AIDS: provided, that such treatment or care carry the risk of HIV transmission: provided, further that such workers shall be obliged to maintain the shared confidentiality.” (Article 6, Sec.31b of R.A. 8504)  “When responding to a subpoena duces tecum and subpoena ad testificandum issued by a court with jurisdiction over a legal proceeding where the main issue is the HIV status of an individual: provided, that the confidential medical record shall be properly sealed by its lawful custodian after being double-checked for accuracy by the head of the office or department, hand delivered, and personally opened by the judge: provided, that the judicial proceedings be held in executive session.” (Article 6, Sec.31c of R.A. 8504)  HIV infected health workers should also disclose their status to their patients. To further continue their treatment and health care services to the client, a written informed consent must be given allowing the health care practitioner to continue his care for the patient. An expert panel may also be required to review the case of any HIV-infected health care worker who perform invasive procedures that might lead to the transmission of HIV.

HIV Testing, Screening, and Counseling

MANDATORY TESTING -

will provide the following advantages in cases of HIV-infected individuals  Early diagnosis would perhaps allow for early counseling and assist in curbing the spread of the infection.

 Early treatment is thought to slow the progress from the HIV antibody to fullblown AIDS.  Early use of antiviral drugs is thought to delay the onset of dementia and retard the later resistance to the therapeutics.  It will provide the types of statistics that would allow agencies to better follow the spread of the disease and allow for more reasoned allocations of resources. Concerns in Mandatory Testing: a. The cost of these programs would not only be the cost of the individual tests but also the cost of enforcement of rules and the necessary pretest and posttest counseling. b. Widespread testing could result in widespread discrimination against those that tested positive for the virus. Health care providers must ensure that HIV testing is conducted in such a manner that respects patient autonomy and ensures patient confidentiality to the fullest degree possible. The following are the guidelines for HIV testing, screening, and counseling according to Article 3 of R.A. 8504.  No compulsory HIV testing shall be allowed. However, the State shall encourage voluntary testing for individuals with high risk for contracting HIV provided that a written informed consent must be first obtained. Such consent shall be obtained from the person concerned if he/she is of legal age or from the parents or legal guardian in the case of a minor or a mentally incapacitated individual.  Lawful consent to HIV testing of a donated human body, organ, tissue or blood shall be considered as having been given when a person volunteers or freely agrees to donate his/her blood, organ, or tissue for transfusion, transplantation, or research. Exceptions to the prohibition on compulsory testing:  Testing for prisoners and persons accused of sex crimes  When the determination of the HIV status is necessary to resolve the relevant issues under Executive Order No. 309 or “Family Code of the Philippines.”  When complying with the provisions of organ donation.

 After emergency response workers or health care workers are exposed to their blood or other fluids. An anonymous testing may also be provided to guarantee anonymity and medical confidentiality. ANONYMOUS TESTING – refers to an HIV testing procedure whereby the individual being tested does not reveal his/her true identity. - an identifying number or symbol is used to substitute for a the name and allows the laboratory conducting the test and the person to wh9om the test is conducted to match the test results with the identifying number or symbol. PRENATAL TESTING The Institute of Medicine panel on reducing prenatal HIV transmission conducted that pretest counseling and written informed consent requirements for HIV testing were barriers to prenatal HIV testing because it presented serious psychosocial risks such as rejection, discrimination, and restricted access to health care. It recommended that all pregnant women be tested for HIV as a routine part of prenatal care. Notification that an HIV test will be provided, along with other prenatal blood tests. Pre-Test Counseling – refers to the process of providing an individual information on the biomedical aspects of HIV/AIDS and emotional support to any psychological implications of undergoing HIV testing and the result itself before he/she is subjected to the test The proposals to make HIV testing a routine part of prenatal care raise several concerns. 1. It is unknown whether such testing would be acceptable to pregnant women. 2. If HIV testing becomes a routine, it will become so habitual or mechanical that pregnant women may not realize that they have the option to decline. 3. Caregivers and patients may forget that HIV testing entails much greater psychosocial risks than other blood tests. RELEASE OF HIV TEST RESULTS To whom the results of HIV testing must be given? (a) the person who submitted himself/herself to the test (b) either parent of a minor child who has been tested (c) a legal guardian in case of insane persons and orphans (d) a person authorized to receive such results (health care provider assigned to the client or authorities to whom HIV cases must be reported)

End-of-Life Issues Early in the U.S. epidemic, before antiretroviral therapy was available, HIV infection often quickly progressed to a terminal illness. In many cases, HIV patients were unable to make medical decisions for their care as a result of complications from their disease. In the absence of a written advance directive from the patient, the law and physicians typically look to a family member for surrogate decision-makers. In the developing countries, palliative care is often the tenable goal. Under the circumstances on which antiretroviral therapy does not exist and resource constraints occurs, care may be limited to psychosocial support and helping patients plan for such practical issues such as burial or child custody and support.

RESEARCH ETHICS Research with human participants raises ethical concerns because people accept risks and inconvenience primarily to advance scientific knowledge and to benefit others. Although some research offers the prospect of direct benefit to research participants, most research does not. In the early 1960s, Americans were both horrified and mesmerized in regard to the thalidomide babies. These infants, born with severe deformities, were the result of pregnant women taking a tranquilizer widely used in Europe, which could be purchased without prescription. In response to this tragedy, the Food and Drug Act adopted the Kefeuver amendments, which required that investigational and new drugs (INDs) obtain premarket approval. This was to assure the public that drugs would not reach the market without well-controlled studies proving that they were efficacious and safe.

Research Design It is unethical to expose subjects to the risk of participating in a research study unless the design is sufficiently rigorous that the results will be valid and generalized. To meet ethical obligations for research, the study size must be adequate and appropriate study endpoints must be chosen. Clinical trials usually require preliminary laboratory and animal research.

Informed Consent • • •

The expectations of potential research participants may complicate obtaining informed consent in the research context. Many participants enter research studies to benefit personally. The language that investigators use may have significantly different meanings for participants and affect their understanding of their participation. Many participants also do not understand randomization and expect that decisions about which intervention they receive will be based on their individual clinical needs.

•

Some may not even be aware that they are participating a research. Health care providers can address these problems by:  Clarifying that participation in clinical trial in voluntary and will not influence a patient’s care.  Making clear whether they are recommending a patient participate in the trial or merely offering the opportunity.  Checking that the patients have understood the key aspects of the trial and correcting any misunderstandings. If the health care provider is also the investigator, another member of the research team-if possible-should handle consent discussions and follow-up visits that are part of the study.

Conflicts of Interest Health care providers gain prestige, grants, and promotions through their research and publication of their work. Accordingly, they have a personal interest in recruiting and maintaining participants in their studies. Some steps can be taken to minimize conflicting interests: Openly discuss the research plans with colleagues and ensuring peer review of research protocols. Bind investigators and participants to which intervention participants are receiving. Using an independent data safety monitoring board to interpret interim data and assess reports of adverse events. Disclose conflicting interests unrelated to the patient’s health that may affect the health care provider’s professional judgment.

Vaccine Research The Joint United Nations Programme on HIV/AIDS (UNAIDS) issued a guideline regarding preventive HIV vaccine research. Some key points are:  Early phase clinical trials should take place in sponsor (developed) countries, unless here are specific scientific and public reasons to justify conducting trials in a host (developing) country.  Placebo-controlled vaccine trials are ethically acceptable as long as there is no known effective preventive vaccine.  Placebo-controlled trial may be ethically acceptable, even if proven therapy is available, where for compelling and scientifically sound methodological reasons its use is necessary to determine the efficacy or safety of a

prophylactic, diagnostic, or therapeutic method. (World Medical Association, 2001)  All vaccine trial participants should have access to appropriate riskreduction counseling and access to prevention methods.  An appropriate monitoring system must be in place. Participants with HIV preventive vaccine trials should be provided with care and treatment for HIV/AIDS and its complications, with the ideal being to provide the best proven therapy, and the minimum to provide the highest level of care attainable in the host country in light of: The level of care and treatment available in the sponsor country Highest level of care available in the host country Availability of infrastructure to provide care and treatment in the context of research Potential duration and sustainability of care and treatment for the trial participant

I.

MEANING

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The physically abused or neglected child presents a medical, social and legal problem. What constitutes an abused child is difficult to determine, because it is often impossible to ascertain whether a child was injured intentionally or accidentally.

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Which includes physical, sexual and emotional abuse, as well as neglect, is a form of family violence? Family violence is an “action by a family member with the intent to cause harm to or control another family member”. The most common form of child abuse falls under the category of neglect.

•

The ethical responsibility of nurses in the care of children includes the responsibility to be alert to the signs of abuse. Nurses, along with all other health care professionals, are considered mandatory reporters of possible abuse. Situations that signal possible abuse include:  

Conflict between the explanation of how an incident occurred and the physical findings, such as poorly explained bruises or fractures; Age-inappropriate behavior or behaviors that signify poor social adjustment, such as “aggressive behavior, social withdrawal, depression, lying, stealing, thumb sucking”, risk-taking, etc;

   •

Alcohol and other drug abuse; Problems in school Suicidal ideation.

An abused child is generally defined as a person younger than 18 years of age whose parent or other parent or other person legally responsible for his or her care does any of the following: inflicts, or allows to be inflicted, upon that child, physical injury by non accidental means that causes or creates a substantial risk of death, serious or protracted loss or impairment of the function of any bodily organ; commits, or allows to be committed, a sex offense against that child; and/or allows, permits, or encourages the child to engage in an act considered unlawful.

Maternal substance abuse The effects of maternal substance abuse are detrimental to a fetus or newborn. However, according to research, some pregnant women who abuse drugs do not seem to understand the potential harm that they are inflicting on their unborn children. As one would expect, the women who are unaware of the danger that they are posing to their unborn children are those women who are abusing drugs but who do not seek help. This same group of women also was found to be more likely to believe that having a small baby is a positive occurrence. The results of this research underscore the need for wide-scale community education programs about maternal drug abuse. Nurses can be a valuable resource in this effort. Maternal drug screening is not performed routinely, and testing a woman or an infant without informed consent is considered a violation of a patient’s right to privacy. Additionally, if maternal or newborn testing is performed without the mother’s consent and the test is found to be positive, any decision to restrict or remove par4ental rights would be based on illegally obtained evidence. The handling and treatment of maternal drug abuse varies from state to state. Possible scenarios include: Prosecution of a pregnant woman who abuses drugs Charging a pregnant woman with drug possessions if she is arrested for drug abuse prior to fetal viability Charging a pregnant woman with distribution of drugs to a minor if she is arrested for drug abuse after the fetus is considered viable Reduction of parental rights Priority access to drug treatment centers in some states for known maternal substance abusers II. FORMS OF CHILD ABUSE 1. Sexual abuse

Sexual abuse is any sexual contact with a child or the use of a child for the sexual pleasure of someone else. This may include exposing private parts to the child or asking the child to expose him or herself, fondling of the genitals or requests for the child to do so, oral sex or attempts to enter the vagina or anus with fingers, objects or penis, although actual penetration is rarely achieved. The pattern was distinctly different for child sexual abuse. • • • •

Almost-one half of sexually abused children were sexually abused by someone other than a parent or a parent-substitute. Just over one-fourth were sexually abused by a birth parent and one-fourth was sexually abused by parent-substitute. A sexually abused child was most likely to sustain serious injury or impairment when a birth parent was the perpetrator. Male perpetrators committed 89% of known child sexual abuse versus only 12% by females but this statistic fails to include non-contact forms of child sexual abuse that females often prefer which causes serious psychological injury and impairment. It also fails to mention social double standards, lack of research, reporting biases and other serious obstacles that hinder the gathering of credible data on overt (contact) female sexual abuse of children. Statistics • • • • • • •

1 in 4 girls and at least 1 in 10 boys is sexually abused in some way by the age of 18 10% of those children are preschoolers 85-90% involve perpetrator known to the child 35% involve a family Only 10% of the offenses involve physical violence 50% of all assaults take place in the home of the child or the offender The average offender is involved with over 70 children in his or her "career" of

Physical Indicators • • • • • •

difficulty walking or sitting torn clothing, stained or bloody underwear pain or itching in genital area venereal disease, especially in preteens pregnancy

Behavioral Indicators in Child Children often do not tell us with words that they have been sexually abused or that they have successfully resisted an assault and don't know quite what to do next. There are many reasons children might hesitate or be afraid to tell us about what has happened, including their relationship to the offender,

fear of the consequences, retaliation or uncertainty about whether or not they will be believed. Any one of the following signs could indicate that there has been a sexual assault or it could be indicative of another problem. Whatever has caused the change in behavior should be explored. • • • • • • • • • • • • • •

sudden reluctance to go someplace or be with someone inappropriate displays of affection sexual acting out sudden use of sexual terms or new names for body parts uncomfortableness or rejection of typical family affection sleep problems, including: insomnia, nightmares, refusal to sleep alone or suddenly insisting on a night light regressive behaviors, including: thumb-sucking, bed-wetting, infantile behaviors or other signs of dependency extreme clinginess or other signs of fearfulness a sudden change in personality problems in school unwilling to participate in or change clothing for gym class at school runs away from home bizarre or unusual sophistication pertaining to sexual behavior or knowledge, including sexual acting out reports sexual assault by parent or guardian

Indicators of Sexually Abusive Parent/Guardian • • • • • • •

Overly protective or jealous of child and friends abuses alcohol or other drugs encourages exhibitionism in child voyeuristic, seductive to child exposes child to pornographic and sexually stimulating pictures encourages the child in promiscuous and/or prostitute acts freely talks or boasts about sexual themes with child

2. Physical Abuse Non-accidental physical injury may include severe beatings, burns, biting, strangulation and scalding with resulting bruises, welts, broken bones, scars or serious internal injuries. An "abused child", under the law, means a child less than 18 years of age whose parent or other person legally responsible for the child's care inflicts or allows to be inflicted upon the child physical injury by other than accidental means which causes or creates substantial risk of death or serious disfigurement, or impairment of physical health, or loss or impairment of the function of any bodily organ. Physical Indicators

• • • • • • • •

bite marks unusual bruises lacerations burns high incidence of accidents or frequent injuries fractures in unusual places injuries, swellings to face and extremities discoloration of skin

Behavioral Indicators in Child • • • • • • • • • • • • • • •

avoids physical contact with others apprehensive when other children cry wears clothing to purposely conceal injury, i.e. long sleeves refuses to undress for gym or for required physical exams at school gives inconsistent versions about occurrence of injuries, burns, etc. seems frightened by parents often late or absent from school comes early to school, seems reluctant to go home afterwards has difficulty getting along with others, little respect for others overly compliant, withdrawn, gives in readily and allows others to do for him/her without protest plays aggressively, often hurting peers complains of pain upon movement or contact has a history of running away from home reports abuse by parents

Family or Parental Indicators • • •

• • • • • • • • • • • •

many personal and marital problems economic stress parent(s) were abused as children themselves, were raised in homes where excessive punishment was the norm, and use harsh discipline on own children highly moralistic history of alcohol or drug abuse are easily upset, have a low tolerance for frustration are antagonistic, suspicious and fearful of other people social isolation, no supporting network of relatives or friends see child as bad or evil. little or no interest in child's well-being; do not respond appropriately to child's pain explanation of injuries to child are evasive and inconsistent blame child for injuries constantly criticize and have inappropriate expectations of child take child to different physicians or hospital for each injury

2. Emotional Abuse Emotional abuse is a pattern of behavior that attacks a child's emotional development and sense of self-worth. Emotional abuse includes excessive, aggressive or unreasonable demands that place expectations on a child beyond his or her capacity. Constant criticizing, belittling, insulting, rejecting and teasing are some of the forms these verbal attacks can take. Emotional abuse also includes failure to provide the psychological nurturing necessary for a child's psychological growth and development -- providing no love, support or guidance. Observable Indicators • • • • • •

child rocks, sucks, bites self inappropriately aggressive, destructive to others suffers from sleep, speech disorders restricts play activities or experiences demonstrates compulsions, obsessions, phobias, hysterical outbursts

Behavioral Indicators in Child • • • • • • •

negative statements about self shy, passive, compliant lags in physical, mental and emotional development self destructive behavior highly aggressive cruel to others overly demanding

Family or Parental Indicators • • • • •

blames or puts down child is cold and rejecting indifferent to child's problems or welfare withholds affection shows preferential treatment when there is more than one child in the family

3. Neglected Child Abuse Neglected Child" means a child less than 18 years of age whose physical, mental or emotional condition has been impaired or is in danger of becoming impaired as a result of the failure of the child's legal guardian to exercise a minimum degree of care in supplying the child with adequate food, clothing, shelter, or education or medical care. Neglect also occurs when the legal guardian fails to provide the child with proper supervision or guardianship by allowing the child to be harmed, or to be at risk of harm which includes when the guardian misuses drugs or alcohol him/herself.

Observable Indicators • • • • • •

dirty skin offensive body odor unwashed, uncombed hair tattered, under or oversized and unclean clothing dressed in clothing that is inappropriate to weather or situation frequently left unsupervised or alone for periods of time (Note: This is the most frequent cause of child death and should not be minimized)

Indicators of Poor Health • • • • • • • •

drowsiness, easily fatigued puffiness under the eyes frequent untreated upper respiratory infections itching, scratching, long existing skin eruptions frequent diarrhea bruises, lacerations or cuts that are infected untreated illnesses physical complaints not responded to by parent

Indicators of Malnutrition • • • • • • •

begging for or stealing food frequently hungry rummaging through garbage pails for food gorging self, eating in large gulps hoarding food obesity overeating junk foods

Indicators in Infants and Toddlers • • • • • • • • • •

listlessness poor responsiveness does not often smile, cry, laugh, play, relate to others lacks interest, curiosity rocks, bangs head, sucks hair, thumb, finger, tears at body is overly self-stimulating, self-comforting does not turn to parent for help or comfort hospitalization for failure to thrive - regresses upon return to home unduly over or under active for no apparent purpose

Indicators in Children

• • • • • • • • • • • • • • • • •

cries easily when hurt even slightly comes to school without breakfast has no lunch or lunch money needs dental care, glasses falls asleep in class often seems in a fog or dream world comes to school early, does not want to go home sees self as failure troublesome at school does no homework, refuses to try destroys completed written work destroys books, assignments and learning aids or toys is withdrawn, overactive, underactive and/or lethargic (depressed) is cruel to classmates lies, steals from classmates, school breaks objects or damages school property frequently absent or late for school

Indicators with Parents and Family • • • • • • • • •

promises but does not follow up on recommendations fails to keep appointments and/or refuses help from school or other resources abuses alcohol or other drugs lifestyle of relative isolation from relatives, friends history of abuse or neglect as a child disorganized, chaotic home life history of chronic illness gives impression of resignation and feeling that nothing makes much difference anyway failure to provide supervision of children (This is the most frequent cause of child death and should not be minimized)

Abuse commonly produces feelings of: • • • •

guilt violation loss of control lowered self-esteem.

Even those who seem to be handling their abuses are concerned that: • • •

it might happen again they did something wrong future relationships might be abusive

LONG-TERM EFFECTS OF ABUSE

Common problems for abused children include: • • • •

emotional problems behavioral problems poor performance in school further abuse

While these effects are not always obvious, they are important. Long-term studies of low achievers, runaways, drug abusers, prostitutes and incarcerated individuals paint a disturbing picture. Abuse is a consistent and pervasive element in their backgrounds. Low self-esteem and poor self-concept are ever-present. III. Children of single parents were at higher risk of physical abuse and all types of neglect and were over-represented among seriously injured, moderately injured and endangered children. Compared with their counterparts living with both parents, children in single-parent families had: a 77-percent greater risk of being harmed by physical abuse. an 87-percent greater risk of being harmed by physical neglect. a 74-percent greater risk of being harmed by emotional neglect. a 220-percent (or more than three times) greater risk of being educationally neglected. a 120-percent greater (more than two times) greater risk of being endangered by some type of child abuse or neglect. Among children in single parent households, those living with only their father were approximately one and two-thirds more likely to be sexually abused than those living only with their mothers. Children in families with income below $15,000 dollars a year were 14-56 times more likely to suffer specific forms of serious child abuse vs children from families with incomes of $30,000 per year or more. Family income was significantly related to incidence rate of nearly every category of maltreatment. Children from families with income below $15,000 are over 31 times more likely to be considered endangered, although not yet injured, by some type of abusive or neglectful treatment than those from families with incomes of $30,000 per year or more. Children under age 12, and especially those ages 6-11 were at highest risk for all forms of mistreatment. However, one form of abuse, the sexual abuse of

children has a strikingly low age transition in the distribution of incidence rates. The rate of child sexual abuse was very low for 0-2 year olds, but then relatively constant for children ages 3 and older, indicating a very wide range of vulnerability from pre-school age on. Neglect is the most common form of child maltreatment. CPS investigations determine that 63 percent of victims in 2001 suffered neglect; 19 percent, physical abuse; 10 percent, sexual abuse; and 8 percent, emotional maltreatment. IV.

RESPONSIBILITY OF THE NURSE

Nurses have an ethical responsibility to recognize maternal substance abuse. Although nurses might personally find a pregnant woman’s substance abuse morally objectionable, compassion is warranted. A family rather than an individual person is wounded by the woman’s abusive behavior. Although action must be taken to protect a fetus or child that is at risk from maternal substance abuse, nurses must consider that a woman’s decision or desire to seek treatment might result in curtailed parental rights. Consequently, a woman’s decision to obtain help often involves limited trust toward health care providers. If you suspect child abuse of any kind, you should: • • • • • • • •

Take the child to a quiet, private area. Gently encourage the child to give you enough information to evaluate whether abuse may have occurred. Remain calm so as not to upset the child. If the child reveals the abuse, reassure him/her that you believe him/her, that he/she is right to tell you, and that he/she is not bad. Tell the child you are going to talk to persons who can help him/her. Return the child to the group (if appropriate). Record all information. Immediately report the suspected abuse to the proper local authorities. In most states, reporting suspected abuse is required by law.

The ethical responsibility of nurses in the care of children includes the responsibility to be alert to the signs of abuse. Nurses, along with all other health care professionals, are considered mandatory reporters of possible abuse. Situations that signal possible abuse include:  Conflict between the explanation of how an incident occurred and the physical findings, such as poorly explained bruises or fractures;  Age-inappropriate behavior or behaviors that signify poor social adjustment, such as “aggressive behavior, social withdrawal, depression, lying, stealing, thumb sucking”, risk-taking, etc;  Alcohol and other drug abuse;  Problems in school  Suicidal ideation.

The usual responsibility of handling a patient’s treatment confidentiality is waived in the instance of suspected child abuse, even when the person reporting the abuse is the patient. Abuse does not need to be confirmed as factual order to be reportable. The identification of suspected abuse should be promptly reported to the agency designated by each state. There is legal protection in most states for professionals, including nurses, who are reporting suspected abuse in good faith. However, health care professionals may be exposed to legal sanctions if they fail to report suspected abuse to the appropriate agencies. An abused child is one who has suffered intentional serious mental, emotional, sexual, and/or physical injury inflicted by a parent or other person responsible for the child’s care. In general, nurses must develop and use practical wisdom in reasoning and deciphering what is what in a situation. The whole context of the parent-child relationship must be considered. Does the nurse know the mothering person and the child well? If not, the nurse can try to ask carefully crafted questions to assess the patterns of behavior that he mothering person consistently or inconsistently uses to discipline the child. Assessing stress factors that may be occurring in the family is essential. The nurse can be a valuable advocate for the parent and child in trying to connect stressed mothering persons with resources to help address their problems. If a child reports parental punishment to the nurse and the nurse is initially unsure hot to react to the information, more information should be sought. As Dewey proposed in the example of a doctor’s need to suspend initial judgments when diagnosing a patient, moral imagination can be useful to the nurse. In situations of corporal punishment, unless there are obvious signs of child abuse, a nurse must suspend judgment long enough to assess the situation while not waiting too long and overlooking true or reasonable suspicions of abuse. V. SUMMARY In many ways, the legal and ethical issues clinicians confront in treating patients involved in child maltreatment are similar whether the abuse is singular or in multiple forms. The clinician needs to maintain an awareness of the issues of reporting requirements, confidentiality, boundary issues including dual relationships, and scope of practice and competence in order to meet the treatment needs of the individual or family while at the same time practice within the legal and ethical standards of their profession. Because laws and ethical standards have been created to protect both the consumer and society at large, decisions in this regard must be taken seriously.

A research study is designed to answer specific questions, sometimes about a drug or device’s safety and its effectiveness. Being in a research study is different from being a patient. As a patient, one’s personal physician has a great deal of freedom in making health care decisions. As a research subject, the Protocol Director and the research staff follow the rules of the research study (protocol) as closely as possible, without compromising the patient’s health. Ethical principles relevant to the ethics of research involving human subjects include respect for person, beneficence, and justice. These principles cannot always be applied to resolve ethical problems beyond dispute. The objective in applying ethical principles is to provide an analytical framework that will guide the resolution of ethical problems arising research involving human subjects. Ethical considerations that must be addressed when conducting research on human subjects include personal autonomy; self-determination; the ethical considerations involved in using persons as subjects of research; the Hippocratic maxim of “do no harm” and the Hippocratic oath’s requirement that physicians benefit their parents “according to their best judgment”; research involving subjects; and various meanings of the term “justice” such as whether burdens are to be distributed to each person equally, to each according to his needs, to each according to his societal contribution, or to each according to merit. The science of medicine, by the very nature of that which it studies, the human boy, is often prevented from making progress through direct experimentation. It must resort to necessary tests in laboratories and on animals, whose reactions are similar to humans. But most of all, it advances by observing how the body functions in health and in disease. It is natural that much of this laboratory experimentation and clinical observation should be done in the hospital. To increase the possibility of advancement by observation, clinical records must be accurate and complete in every case, no matter how trivial, and they should be preserved in such a manner as to be available for the study of similar cases. New remedies of all kinds should be tried out under conditions that favor accurate observation. Laboratories should be available under the direction of scientific physicians, and results of examinations should be carefully compiled and studied. Systematized research is possible only when directed by a physician with scientific specialty, and it is rare not to find one such individual working in every hospital. Medical progress and improved patient care are dependent on advances in medicine made through research. The basis principle of research is honesty, which must be ensured through institutional protocols. Fraud in research is not uncommon, and it must be condemned and punished. Honesty and integrity must govern all stages of research.

The Nuremberg Code and the declaration of Helsinki is an international code of ethics that governs human research and experimentation. It was set to place after the discovery of Nazi medical atrocities of World War. II. The code requires that the human subjects be fully informed as to the nature and societal benefits of the research being undertaken. The code provides guidelines for the development of federal regulations for medical research and the protection of human subjects. Federal regulations control federal grants that apply to experiments involving new drugs, new medical devices, or new medical procedures. Generally, a combination of federal and state guidelines and regulations ensures proper supervision and control over experimentation that involves human subjects. Human Experimentation and self-experimentation Human experimentation involves medical experiments performed on human beings. It is an important part of medical research, and many people volunteer for clinical trials of medical treatments. Some people also volunteer to be subjects for experiments in basic medical science and biology. Some experiments can involve the testing of cosmetic products or ingredients on humans instead of animals. In some notable cases, doctors have performed experiments on themselves, when they have been unwilling to risk the lives of others. This is known as self-experimentation. Ethical Guidelines for Biomedical Research on Human Subjects General statement: Medical and related research using human beings as subjects must necessarily ensure that (i) The PURPOSE, of such research is that it should be directed towards the increase of knowledge about the human condition in relation to its social and natural environment, mindful that the human species is one of the many species in a planet in which the well being of all species is under threat, no less from the human species as any other, and that such research is for the betterment of all, especially the least advantaged. (ii) Such research is CONDUCTED under conditions that no person or persons become a mere means for the betterment of others and that human beings who are subject to any medical research or scientific experimentation are dealt with in a manner conducive to and consistent with their dignity and well being, under conditions of professional fair treatment and transparency; and after ensuring that the subject is placed at no greater risk other than such risk commensurate with the well being of the subject in question in the light of the object to the achieved. (iii) Such research must be subjected to a regime of EVALUATION at all stages of the proposal i.e., research design and experimentation, declaration of results and use of the results thereof, and that each such evaluation shall bear in mind the

objects to be achieved, the means by which they are sought to be achieved, the anticipated benefits and dangers, the potential uses and abuses of the experiment and its results, and above all, the premium that civilized society places on saving and ensuring the safety of each human life as an end in itself. Statement of General Principles Any research using the human beings as subjects of medical or scientific research or experimentation shall bear in mind the following principles – I. Principles of Essentiality whereby, the research entailing the use of human subjects is considered to be absolutely essential after a due consideration of all alternatives in the light of the existing knowledge in the proposed area of research and after the proposed research has been duly vetted and considered by an appropriate and responsible body of persons who are external to the particular research and who, after careful consideration, come to the conclusion that the said research is necessary for the advancement of knowledge and for the benefit of all members of the human species and for the ecological and environmental well being of the planet. II. Principles of Voluntariness, informed consent and community agreement whereby, research subjects are fully apprised of the research and the impact and risk of such research on the research subject and others; and whereby the research subjects retain the right to abstain from further participation in the research irrespective of any legal or other obligation that may have been entered into by such human subjects or someone on their behalf, subject to only minimal restitutive obligations of any advance consideration received and outstanding. Where any such research entails treating any community or group of persons as a research subject, these principles of voluntariness and informed consent shall apply, mutatis mutandis, to the community as a whole and to each individual member who is the subject of the research or experiment. Where the human subject is incapable of giving consent and it is considered essential that research or experimentation be conducted on such a person incompetent to give consent, the principle of voluntariness and informed consent shall continue to apply and such consent and voluntariness shall be obtained and exercised on behalf of such research subjects by someone who is empowered and under a duty to act on their behalf. The principles of informed consent and voluntariness are cardinal principles to be observed throughout the research and experiment, including its aftermath and applied use so that research subjects are continually kept informed of any and all developments in so far as they affect them and others. However, without in any way undermining the cardinal importance of obtaining informed consent from any human subject involved in any research, the nature and form of the consent and the evidentiary requirements to prove that such consent was taken, shall depend upon the degree and seriousness of the invasiveness into the concerned human subject’s person and privacy, health and life generally, and, the overall purpose and the importance of the research. III. Principles of Non-Exploitation whereby as a general rule, research subjects are remunerated for their involvement in the research or experiment; and,

irrespective of the social and economic condition or status, or literacy or educational levels attained by the research subjects kept fully apprised of all the dangers arising in and out of the research so that they can appreciate all the physical and psychological risks as well as moral implications of the research whether to themselves or others, including those yet to be born. Such human subjects should be selected so that the burdens and benefits of the research are distributed without arbitrariness, discrimination or caprice. Each research shall include an in-built mechanism for compensation for the human subjects either through insurance cover or any other appropriate means to cover all foreseeable and unforeseeable risks by providing for remedial action and comprehensive aftercare, including treatment during and after the research or experiment, in respect of any effect that the conduct of research or experimentation may have on the human subject and to ensure that immediate recompense and rehabilitative measures are taken in respect of all affected, if and when necessary. IV. Principles of privacy and confidentiality whereby, the identity and records of the human subjects of the research or experiment are as far as possible kept confidential; and that no details about identity of said human subjects, which would result in the disclosure of their identity, are disclosed without valid scientific and legal reasons which may be essential for the purposes of therapeutics or other interventions, without the specific consent in writing of the human subject concerned, or someone authorized on their behalf; and after ensuring that the said human subject does not suffer from any form of hardship, discrimination or stigmatization as a consequence of having participated in the research or experiment. V. Principles of Precaution and Risk Minimization whereby due care and caution is taken at all stages of the research and experiment (from its inception as a research idea, its subsequent research design, the conduct of the research or experiment and its applicative use) to ensure that the research subject and those affected by it are put to the minimum risk, suffer from no irreversible adverse effects and, generally, benefit from and by the research or experiment; and that requisite steps are taken to ensure that both professional and ethical reviews of the research are undertaken at appropriate stages so that further and specific guidelines are laid down, and necessary directions given, in respect of the conduct of the research or experiment. VI. Principles of Professional Competence whereby, the research is conducted at all times by competent and qualified persons who act with total integrity and impartiality and who have been made aware of, and are mindful of, the ethical considerations to be borne in mind in respect of such research or experiment. VII. Principles of Accountability and Transparency whereby, the research or experiment will be conducted in a fair, honest, impartial and transparent manner after full disclosure is made by those associated with the research or experiment of each aspect of their interest in the research, and any conflict of interest that may exist; and whereby, subject to the principles of privacy and confidentiality and the rights of the researcher, full and complete records of the research inclusive of data and notes are retained for such reasonable period as may be prescribed or considered necessary for the purposes of post-research monitoring, evaluation of

the research, conducting further research (whether by the initial researcher or otherwise) and in order to make such records available for scrutiny by the appropriate legal and administrative authority, if necessary. VIII. Principles of the Maximization of the public interest and of distributive justice whereby, the research or experiment and its subsequent applicative use are conducted and used to benefit all human kind and not just those who are socially better off but also the least advantaged; and in particular, the research subject themselves. IX. Principles of Institutional Arrangements whereby, there shall be a duty on all persons connected with the research to ensure that all the procedures required to be complied with and all institutional arrangements required to be made in respect of the research and its subsequent use or application are duly made in a bonafide and transparent manner; and to take all appropriate steps to ensure that research reports, materials and data connected with the research are duly preserved and archived. X. Principles of Public Domain whereby, the research and any further research, experimentation or evaluation in response to, and emanating from such research is brought into the public domain so that its results are generally made known through scientific and other publications subject to such rights as are available to the researcher and those associated with the research under the law in force at that time. XI. Principles of Totality of Responsibility whereby the professional and moral responsibility, for the due observance of all the principles, guidelines or prescriptions laid down generally or in respect of the research or experiment in question, devolves on all those directly or indirectly connected with the research or experiment including the researchers, those responsible for funding or contributing to the funding of the research, the institution or institutions where the research is conducted and the various persons, groups or undertakings who sponsor, use or derive benefit from the research, market the product (if any) or prescribe its use so that, inter alia , the effect of the research or experiment is duly monitored and constantly subject to review and remedial action at all stages of the research and experiment and its future use. XII. Principles of Compliance whereby, there is a general and positive duty on all persons, conducting, associated or connected with any research entailing the use of a human subject to ensure that both the letter and the spirit of these guidelines, as well as any other norms, directions and guidelines which have been specifically laid down or prescribed and which are applicable for that area of research or experimentation, are scrupulously observed and duly complied with. *** These 12 principles laid down under Statement on General Principles are common to all areas of biomedical research. Experimental Subject’s Bill of Rights

As a human subject, you have the following rights. These rights include, but are not limited to, the subject’s right to:  Be informed of the nature and purpose of the experiment.  Be given an explanation of the procedures to be followed in the medical experiment, and any drug or device to be utilized.  Be given a description of any attendant discomforts and risks reasonably to be expected  Be given an explanation of any benefits to the subject reasonably to be expected, if applicable  Be given a disclosure of any appropriate alternatives, drugs, or devices that might be advantageous to the subject, their relative risks, and benefits  Be informed of the avenues of medical treatment, if any, available to the subject after the experiment if complications should rise  Be given an opportunity to ask questions concerning the experiment or the procedures involved  Be instructed that consent to participate in the medical experiment may be withdrawn at any time and the subject may discontinue participation without prejudice  Be given a copy of the signed and dated consent form  Be given the opportunity to decide to consent or not to consent to a medical experiment without the intervention of any element of force, fraud, deceit, duress, coercion, or undue influence on the subject’s decision. General Ethical Issues All the research involving human subjects should be conducted in accordance with the four basic ethical principles, namely autonomy (respect for person / subject) beneficence, non-maleficence (do no harm) and justice. 1. Informed Consent of Subject Physicians have a clear duty to warn patients as to the risks and benefits of an experimental procedure, as well as the alternatives to a proposed experimental procedure. Written consent should be obtained from each patient who participates in a clinical trial. Consent should also include the risks, benefits, and alternatives to the proposed treatment protocol. The consent form must not contain any coercive or exculpatory language through which the patient is forced to waive his or her legal rights, including the release of the investigator, sponsor, or organization from liability for negligent conduct. Organizations conducting clinical trials on human subjects, at the very least must:  Fully disclose to the patient the inherent risks, benefits, and treatment alternatives to the proposed research protocol/s  Determine the competency of the patient to consent  Obtain written consent from the patient

 Educate the staff as to the potential side effects, implementation of, and ongoing monitoring of protocols  Require financial disclosure issues associated with the protocols - promote awareness of ethical issues - promote education in regard to ethical decision making - increase nurse participation in ethical decision making - have ongoing monitoring of approved protocols 2. Defining risks and benefits Potential risks and benefits should be discussed thoroughly with prospective subjects. In genetic research, the primary risks are psychosocial rather than physical. Adequate counseling should be given to subjects on the meaning of genetic information they receive. Only those persons who are qualified and experienced in communicating the meaning of genetic information should undertake genetic counseling. 3. Compensation for Participation Subjects may be paid for the inconvenience and time spent, and should be reimbursed for expenses incurred, in connection with their participation in research. They may also receive free medical services. However, payments should not be so large or the medical services so extensive as to induce prospective subjects to consent to participate in research against their better judgment (inducement). Medical Research: Duty to Warn About 5,000 patients at Michael Reese Hospital and Medical Center, located in Chicago, Illinois, were treated with X-ray therapy for some benign conditions of the head and neck from 1930 to 1960. Among them was Joel Blaz, now a citizen of Florida, who received this treatment for infected tonsils adenoids while a child in Illinois from 197 through 48. He has suffered various tumors, which he now attributes to this treatment. Blaz was diagnosed with a neural tumor in 1987. In 1947, Michael Reese set up a Thyroid Follow-up Project to gather data and conduct research among the people who had been subjected to the X-ray therapy. In 1975, the Program notified Blaz by mail that he was at increased risk o developing thyroid tumors because of the treatment. In 1976, someone associated with the Program gave him similar information by phone and invited him to return to Michael Reese for evaluation and treatment at his own expense, which he declined to do. Dr. Arthur Schneider was put in charge of the Program in 1977. In 1979, Schneider and Michael Reese submitted a research proposal to the National Institutes of Health stating that a study based on the program showed “strong evidence” of a connection between X-ray treatments of the sort administered to Blaz and various sorts of tumors: thyroid, neural, and other. In 1981, Blaz received but did not complete or return a questionnaire attached to a letter from Schneider in connection with the Program. The letter stated that the purpose of the questionnaire was to “investigate the long-term health implications” of childhood radiation treatments and to “determine the possible associated risk.” It did not say anything about “strong evidence” of a connection between the treatments and any tumors.

In 1996, after developing neural tumors, Blaz sued Michael Reese’s successors, Galen Hospital in Illinois, and Dr. Schneider, alleging, among other things, that they failed to notify and warn him of their findings that he might be at greater risk of neural tumors in a way that might have permitted their earlier detection and removal or other treatment. There is a clear duty to warn the subject of previously administered radiation treatments when there is a strong connection between those treatments and certain kinds of tumors. The harm alleged, neural and other tumors, would here be reasonably foreseeable as a likely consequence of a failure to warn, and was in fact foreseen by Schneider. A reasonable physician, indeed any reasonable person, could foresee that if someone were warned of “strong evidence” of a connection between treatments to which he had been subjected and tumors, he would probably seek diagnosis or treatment or perhaps avoid these tumors, and if he were not warned he probably would not seek diagnosis or treatment, increasing the likelihood that e would suffer from such tumors. Other things being equal, therefore, a reasonable physician would warn the subject of the treatments.

Elder Abuse, Dementia and Human Personhood Elder Abuse There is no one definition of elder abuse that is accepted throughout the country. Each country has its own definition of elder abuse. These definitions can vary significantly. Abuse can take place in an institutional setting such as a nursing home or residential care facility; in a domestic setting by home care givers (including family members), and it can occur as a result of self-abuse. The rate of elder abuse is unknown due to the incidence of cases that are unreported. As the proportion of the older adults in the population increases, it is possible that elder abuse will become an even greater problem. Elder abuse may affect either sex; however, the victim most often are women who are over 75 years of age, physically or mentally impaired, and dependent for care on the abuser. Generally, regardless of any laws, it can be said that there are six kinds of commonly known elder abuse: 1. Physical Abuse - is generally defined as the improper use of physical force that may or does result in bodily harm, injury, physical pain, or restraint of an individual. The following can constitute physical abuse:

- Physical torture - Battery - Assault (with or without a physical object) - Shoving - Slapping - Pinching - Burning - Kicking - Use of physical or chemical restraints - Corporal (or physical) punishment  Signs and Symptoms: - Unexplained or unexpected death - Development of pressure sores - Heavy medication and sedation used in place of adequate nursing staff - Occurrence of broken bones - Sudden and unexpected emotional outburst, agitation, or withdrawal - Bruises, welts, discoloration, burns and such - Absence of hair and/or hemorrhaging below scalp - Hesitation to talk openly 2. Sexual Abuse - is defined as any non-consensual sexual touching or contact of any kind with an elderly person or a person who is incapable of giving consent (i.e. a mentally disabled individual). The following are examples of sexual abuse: - Rape - Sodomy - Incest - Sexual assault - Sexual battery - Inappropriately coercing another to become exposed or nude  Signs and Symptoms: - Bruises around the breasts or genital area - Unexplained venereal disease or genital infections - Unexplained vaginal or anal bleeding - Torn, stained, or bloody underclothing - Missing underclothes - Depression - Agitated (rocking, swaying, self-talking) - An elder becoming more isolated - An elder's report of being sexually assaulted or raped

3. Psychological abuse - is defined as the intentional or reckless infliction of psychological pain, injury, suffering, or distress through verbal or nonverbal acts. Examples of Psychological abuse are as follows: - Insults - Intimidation - Threats - Harassment - Isolation - Verbal assaults - Humiliation  Signs and Symptoms: - Being emotionally upset or agitated - Being extremely withdrawn and non communicative or non responsive - Unusual behavior usually attributed to dementia (e.g., sucking, biting, rocking) - An elder's report of being verbally or emotionally mistreated 4. Neglect - is defined as the failure to provide for the care and treatment or safety of an elder or fulfill any part of a person's obligations or duties to an elder. Neglect also means the failure to provide necessities of life or comfort to the elder. The following are examples of neglect: - Failure to pay for services - Failure to provide health care services - Failure to adequately provide food, nutrition, and hydration - Failure to assist with activities of daily living - Failure to clean soiled clothing - Failure to monitor needs of elder  Signs and Symptoms: - Dehydration, malnutrition - Untreated bed sores, and poor personal hygiene - Unattended or untreated health problems - Hazardous or unsafe living condition/arrangements (e.g., improper wiring, no heat, or no running water) - Unsanitary and unclean living conditions (e.g. dirt, fleas, lice on person, soiled bedding, fecal/urine smells, inadequate clothing) - Rashes in private areas - Low food intake - Rapid or substantial weight loss - An elder's report of being mistreated

5. Abandonment - is defined as the desertion of an elderly person by an individual who has assumed responsibility for providing care for an elder, or by a person with physical custody of an elder. - Leaving an elder at home alone if he or she cannot provide for themselves - Leaving an elder in the car - Leaving an elder at a location, not at home, for a long time.  Signs and Symptoms: - The desertion of an elder at a hospital, a nursing facility, or other similar institution - The desertion of an elder at a shopping center or other public location and an elder's own report of being abandoned. - No-one has seen the elder for a long time - No visitors are allowed to elder 6. Financial or fiduciary - is defined as the illegal or improper use of an elder's funds, property, or assets or the conversion or misappropriation of such property for uses other than for the elder. The following are examples: - Cashing checks - Changing beneficiaries on estate planning or life insurance documents - Forging a signature - Changing an address on an account - Misusing an elder person's money for personal gain - Deceptive practices regarding property - Improper use of power of attorney, conservatorship, guardianship - Changing ownership of property  Signs and Symptoms: - Changes in bank account or banking practice, including an unexplained withdrawal of large sums of money by a person accompanying the elder - The inclusion of additional names on an elder's bank signature card - Unauthorized withdrawal of the elder's funds using the elder's ATM card - Abrupt changes in a will or other financial documents - Unexplained disappearance of funds or valuable possessions - Discovery of an elder's signature being forged for financial transactions or for the titles of his/her possessions - Sudden appearance of previously uninvolved relatives claiming their rights to an elder's affairs and possessions - Unexplained sudden transfer of assets to a family member or someone outside the family

- An elder's report of financial exploitation Who are the Abusers? More than two-thirds of elder abuse perpetrators are family members of the victims. Most often, these family members are providing care to the elderly person. However, elder abuse also occurs a significant number of times in the institutional setting. The abuse can occur by nurses, certified nursing assistants, social workers, counselors, physicians, or other care givers. Older adults at home may fail to report abuse or neglect for many reasons. They may be ashamed to admit that their children have abused them or fear retaliation if they seek help. They may fear being sent to an institution. They frequently lack financial resources or lack the mental capacity to be aware of abuse or neglect and to report the situation. Despite government oversight in these institutional settings, a large percentage of elder care institutions are found to have caused serious injuries to elders.

Dementia and Human Personhood Dementia is a slow, insidious process that results in progressive loss of cognitive function. It is characterized by changes in memory, judgment, language, mathematic calculation, abstract reasoning, and problem-solving ability and by impulsive behavior, stupor, confusion, and disorientation. Nurses, particularly those nurses working in home care and long-term care settings, often provide care to aging patient with dementia. Kitwood (1997) suggested that our evolving culture has supported society and health care communities in treating demented persons as the “new outcasts of society”. According to Jenkins and Price, the loss experienced by persons with dementia can be likened to a loss of personhood. When people become adjusted to demented persons’ dwindling capacities, they often begin reacting to demented people as less than persons. People with dementia can still be aware of their feelings, even when the person they once seemed to appears to be withering away. It is reasonable to assume that an extreme sense of vulnerability can occur as a person enters the early and middle stages of a progressive dementia. This occurs when some cognitive ability may still exist in the demented person’s awareness of personhood and connectedness to the environment and to others. Kitwood reference to demented persons being the outcasts of society becomes very relevant when those people with dementia lose their significant others and health care professionals. Dignity is jeopardized when caregivers are too focused on making ethical decisions regarding the care of demented persons and forget to actually relate to the persons themselves. Family and care givers of those people with dementia often become frustrated and anxious. Nurses can serve as mentors to other caregivers when nurses exhibit the virtues of loving kindness and equanimity when interacting with patients with dementia and their caregivers. Gentle communication used by nurses also helps to support the overall sense of dignity surrounding the care of

patients with dementia. Environmental calm is created with gentle words, an environment of fear and anxiety can be created when loud and harsh words are used. Inexperienced caregivers learn by observing nurses, who must always be aware of their potential to ultimately help or harm patients by the example they set for others.