“It’s not science fiction. Nowadays prospective parents cannot only know the sex of their unborn child but also learn whether it can supply tissue-matched bone marrow to a dying sibling and whether it is predisposed to develop breast cancer or Huntington’s disease — all before the embryo gets implanted into the mother’s womb.” -Esthur Landhuis
Have you heard of “designer babies”? Or perhaps you saw or read My Sister’s Keeper, a story about a young girl who was conceived through In Vitro Fertilization to be a genetically matched donor for her older sister with leukemia? The concept of selecting traits for one’s child comes from a technology called preimplantation genetic diagnosis (PGD), a technique used on embryos acquired during In Vitro Fertilization to screen for genetic diseases. PGD tests embryos for genetic abnormalities, and based on the information gleaned, provides potential parents with the opportunity to select to implant only the “healthy”, non-genetically diseased embryos into the mother. But this genetic testing of the embryo also opens the door for other uses as well, including selecting whether you have a male or female child, or even the possibility of selecting specific features for the child, like eye color. Thus, many ethicists wonder about the future of the technology, and whether it will lead to babies that are “designed” by their parents.
Today’s post is an exploration of the ethical issues raised by prenatal and preimplantation genetic diagnosis, written by Santa Clara Professor Dr. Lawrence Nelson, who has been writing about and teaching bioethics for over 30 years. Read on to examine the many ethical issues raised by this technology.
Lawrence Nelson is a lawyer and an Associate Professor of Philosophy at Santa Clara University. He has written about and taught bioethics for over 30 years. He can be reached at firstname.lastname@example.org. This blog is in part derived from his chapter on PGD in A Textbook of Perinatal Medicine, edited by A. Kurjak, 2006 edition, CRC Press-Parthenon Publishers, pp. 179-189.
Prenatal and Preimplantation Genetic Diagnosis
The overwhelming majority of people on earth, due to a wide range of reasons, beliefs, bodily motives, and attitudes–some good, some bad, and some in the moral neutral zone–reproduce. They are the genetic, gestational, and/or social (rearing) parents of a child. Birth rates in some countries are at a historic low (Japan‘s is beneath replacement with the consequent deep graying of an entire society). In others, mostly in the developing part of the world where infant and maternal morbidity and mortality (not to mention poverty and disease) are quite high, birth rates remain similarly high.
In the economically developed part of the world, the process of making and having babies has become increasingly medicalized, at least for those fortunate enough to have ready access to the ever more sophisticated tools and knowledge of obstetrical medicine. From the time prior to pregnancy (fertility treatments, in vitro fertilization) to birth (caesarean delivery, high tech neonatal intensive care) and in between (fetal surgery), medical science and technology can help many to reach the goal any good parent should want: the live birth of a healthy child to a healthy mother.“Medical and biological sciences can together determine whether a fetus will (or might) have over a thousand different genetic diseases or abnormalities”
Parallel to obstetrical medicine, science and technology have progressed immensely in another are over the last 30 or so years. The Human Genome Project (and the related research it has stimulated) has generated an amazing amount of knowledge about the nature and identity of normal–and abnormal–human genetic codes. Now the medical and biological sciences can together determine whether a fetus will (or might) have over a thousand different genetic diseases or abnormalities. Ultrasound examination can look into the womb (quite literally) and see developmental abnormalities in the fetus (such as neural tube defects like spina bifida and anencephaly). Even a simple blood test done on a pregnant woman can determine whether the fetus she is carrying has trisomy 21 (down syndrome), a genetic condition associated with mental retardation and, not infrequently, cardiac and other health problems.
Pregnant women who have health insurance that covers obstetrical care (and many millions of American women do not), particularly if they are older (>35 years), are more or less routinely offered prenatal genetic diagnosis by their obstetricians. Chorionic villus sampling is a medical procedure that takes a few fetal cells from the placenta and can be done around 10 weeks after the woman’s last menstrual period. These cells can then be analyzed to determine the presence of genetic abnormalities. Amniocentesis is a medical procedure that obtains fetal cells from the amniotic fluid and is usually done later in pregnancy, typically after 14 weeks following the woman’s last menstrual period. When done by experienced medical professionals, both procedures carry about a 0.5% risk of spontaneous abortion. The genetic analysis done on these fetal cells can determine the presence of fatal genetic diseases (such as Tay-Sachs, trisomy 13 and 18), disease that can cause the born child much suffering (children with Lesch-Nyan, for example, compulsively engage in self-destructive behavior like lip chewing, while children with spinal muscular atrophy have severe, progressive muscle-wasting), and conditions that typically cause mental retardation (such as Fragile-X and Emanuel syndrome).
Although tremendous strides have been made in genetic science’s ability to detect chromosomal abnormalities, precious little success has been achieved in treating genetic disorders directly either prenatally or postnatally. Some symptomatic treatment may well be available, but almost nothing that will actually cure or significantly ameliorate the effects of the disease. A pregnant woman who wishes to avoid the birth of a child with genetic disease has little alternative but to seek termination of the pregnancy.
The science and technology of assisted reproduction (in this case in vitro fertilization [IVF]) meets the science and technology of obstetrical medicine in preimplantation genetic diagnosis (PGD). Embryos are created in vitro by mixing oocytes taken from the woman who intends to gestate one (or more) of them from a donor, and sperm taken from her partner or a donor. Genetic analysis is performed on one or few cells from each embryo, the loss of which does not affect the embryo’s ability to develop normally once implanted in a womb. Only those embryos free of detectable genetic abnormalities are then implanted in the woman’s womb in the hope that they will then attach to the uterine wall and develop normally. While success rates for implantation vary, many women have given birth following PGD. The main advantage of PGD over chorionic villus sampling and amniocentesis for many women and couples is that it avoid the need for a surgical abortion to end an undesired pregnancy, although it does result in discarding the affected embryos.
What ethical issues are raised by Prenatal Genetic Diagnosis and Preimplantation Genetic Diagnosis?
Prenatal genetic diagnosis (PrGD) and preimplantation genetic diagnosis (PGD) both raise a number of serious ethical questions and problems.
What role does money play in ethical issues with PrGD and PGD?
1. Both services are quite expensive (especially PGD which is typically not covered by even private insurance and has the added cost of IVF) and are not available to all who might need or want them. This raises difficult questions of social justice and equity, including whether coverage for these services is morally responsible when social resources for all health care services (those that are life-saving and preventive) are seriously limited.
2. As PGD is generally paid for directly by the persons who utilize it, ethical questions arise about the means clinics use to attract patients and the information they provide them about its risks and benefits. Clinicians are in a fiduciary relationship with their patients and are obligated to act so as to deserve and maintain the patient’s trust and confidence that their wishes and best interests are being faithfully served. Consequently, the marketing of infertility services ought to place the good of patients above other interests (especially a clinician’s or clinic’s own economic interests), should not induce patients to accept excessive, unneeded, or unproven services, and should adhere to high standards of honesty and accuracy in the information provided to prospective patients.
What is the moral status of an embryo?
3. Both PrGD and PGD result in the destruction of embryos and fetuses. If, as some contend, all human embryos and fetuses have the same moral status as live-born persons, then they are entitled to basic rights, including the right not to be killed arbitrarily or for the purpose of advancing the interests of other persons. On this view, both PrGD and PGD would be seriously morally wrong. The opposing view would hold that embryos and fetuses lack any moral status whatsoever as they lack any properties, such as sentience or other cognitive traits, that determine moral standing and so can be destroyed at will.
Perhaps the more commonly held–and more ethically defensible–position is that human embryos and fetuses deserve some modest moral status because they are alive, have some degree of potential to become human persons, and are in fact valued by moral agents whose views deserve at least some respect and deference from others. Nevertheless, they do not possess the full and equal moral standing of persons because they lack interests and other moral claims to personhood. Having a modest level of moral status does not preclude the destruction of embryos and fetuses for a morally serious reason or purpose, and the informed and conscientious choice of the persons who created the embryos to prevent the birth of a child with a serious genetic disease or abnormality is widely (though by no means universally) considered to be such a reason
Does PrGD and PGD lead to discrimination against the disabled?
4. Recently disability activists have strongly challenged what they deem to be the basic assumption underlying PrGD and PGD: reducing the incidence of disease and disability is an obvious and unambiguous good. They rightly criticize certain views that support this assumption: that the disabled’s enjoyment of life is necessarily less than for nondisabled people; that raising a child with a disability is a wholly undesirable thing; and that selective embryo discard or abortion necessarily saves mothers from the heavy burdens of raising disabled children. However, the ethical critique of the disability activists goes much deeper than this quite proper debunking of broadly drawn and inaccurate assumptions about life with any disability. First, they contend that the medical system tends to exaggerate the “burden” associated with having a disability and underestimates the functional abilities of the disabled. The activists also point out how medical language reinforces the negativity associated with disability by using such terms as “deformity” or “defective embryo or fetus.” Second, and more importantly, the disability activists claim that the promotion and use of PGD and traditional prenatal diagnosis “sends a message” to the public that negatively affects existing disabled people and fosters an increase in the oppression and prejudice from which they regularly suffer.“Adults who wish to reproduce are ethically obligated to do so in a responsible manner, and this means gathering and assessing fair and accurate information about what the future might hold for them and the child they might produce.”
Insofar as individual clinicians do, in fact, exaggerate the problems and burdens of living as an individual with a disability or of living with a disabled person as a parent or family member, then they are doing a moral disservice to the people they are duty bound to be helping. Adults who wish to reproduce are ethically obligated to do so in a responsible manner, and this means (insofar as it is possible in a world about which we have imperfect knowledge) gathering and assessing fair and accurate information about what the future might hold for them and the child they might produce. Clinicians (especially genetic counselors) should endeavor to provide this kind of information, supplemented–if at all possible–by the firsthand information that comes from those who have actually lived with disabilities of various kinds as parents of the disabled or from the disabled individuals themselves. On the other hand, these conditions are simply not utterly benign or neutral as each may–and often does–involve what can fairly be described as an “undesirable event such as pain, repeated hospitalizations and operations, paralysis, a shortened life span, limited educational and job opportunities, limited independence, and do forth.” 
Discrimination against persons with disabilities is just as morally repugnant as discrimination against persons based on race, religion, or sex, but it is not at all clear that PrGD and PGD reinforce or contribute to this in any manner. Regardless of how society might change (as it surely ought to change) its attitudes and practices to decrease or, better, eliminate the socially created disadvantages wrongly placed on the disabled–and regardless of how individual persons might change their views on the prospect of knowingly having a child with a serious disability, other persons will prefer not to have a child with a serious disability, no matter how wonderful the social services, no matter how inclusive the society. It is this individual choice that PGD preserves, although the clinicians who offer PGD have a moral obligation to explore their own and their patients’ attitudes about, and understanding of, disability so these individual decisions can be made fairly and responsibly with accurate information about the real world of life with and without disability.
Should people be able to select the sex of their baby?
5. Both PrGD and PGD identify the sex of the embryo or fetus. This raises the question of whether it is ethically permissible for an embryo to be discarded or a fetus to be aborted because of sex. The selection of an embryo’s sex via PGD is done for two basic reasons: (1) preventing the transmission of sex-linked genetic disorders; and (2) choosing sex to achieve gender balance in a family with more than one child, to achieve a preferred order in the birth of children by sex, or to provide a parent with a child of the sex he or she prefers to raise.  While little extended ethical debate exists regarding the former, sex selection for the purpose of preventing the transmission of sex-linked genetic disease, the latter is the subject of heated ethical disagreement.
The ethical objections to sex selection for nonmedical reasons can be grounded both in the very act of deliberately choosing one sex over the other and the untoward consequences of sex selection, particularly if it is performed frequently. Sex selection can be considered inherently ethically objectionable because it makes sex a determinative reason to value one human being over another when it ought to be completely irrelevant: females and males as such always ought be valued equally and never differentially. Sex selection can also be ethically criticized for the undesirable consequences it may generate. Choice by sex supports socially created assumptions about the relative value and meaning of “male” and “female,” with the latter almost universally being considered seriously inferior to the former. By supporting assumptions that hold femaleness in lower social regard, sex selection enhances the likelihood that females will be the targets of infanticide, unfair discrimination, and damaging stereotypes.
Proponents of the ethical acceptability of sex selection would argue that a parent’s desire for family balancing can be–and typically is–morally neutral. The defense of family balancing rests on the view that once a parent has a child of one sex, he or she can properly prefer to have a child of the other sex because the two genders are different and generate different parenting experiences.
To insist [that the experience of parenting a boy is different from that of parenting a girl] is not the case seems breathtakingly simplistic, as if gender played no role either in a person’s personality or relationships to others. Gender may be partly cultural (which does not make it less “real”), but it probably is partly biological…. I see nothing wrong with wanting to have both experiences. 
An opponent of sex selection for family balancing can argue that good parents–whether prospective or actual–ought never to prefer, favor, or give more love to a child of one sex over the other. For example, a morally good and admirable parent would never love a male child more than a female child, give the male more privileges than a female, or give a female more material things than a male simply because of sex or beliefs about the child’s “proper”gender. A virtuous and conscientious parent, then, ought not to think that, or behave as if, a child of one sex is better than one of the other sex, nor should a good parent believe or act as if, at bottom, girls are really different than boys in the ways that truly matter.“Sex selection is at least strongly ethically suspect, if not outright wrong”
The argument in favor of sex selection for family balancing has to assume that gender and gender roles exist and matter in the lived world. For if they did not, then no reason would exist to differentiate the experience of parenting a male child from that of a female. However, it is precisely the reliance upon this assumption to which the opponent of sex selection objects: accepting–and perpetuating–gender roles inevitably both harms and wrongs both males and females, although females clearly suffer much more from them than males. While some gender roles or expectations are innocuous (e.g., men don’t like asking for directions), the overwhelming majority (e.g., males are–and should be–aggressive, women are–and should be–self-sacrificing) are not. Consequently, given that sex selection is inevitably gendered and most gender roles and expectations restrict the freedom of persons to be who they wish to be regardless of gender, sex selection is at least strongly ethically suspect, if not outright wrong.
 Steinbock B. Disability, prenatal testing, and selective abortion. In Parens E, Asch A (eds): Prenatal Testing and Disability Rights 2000; Washington DC, Georgetown Univ. Press: 108-123.
 Ethics Committee of the American Society for Reproductive Medicine. Sex selection and preimplantation genetic diagnosis. Fertility and Sterility 1999; 72(4): 595-598.
 Steinbock B. Sex selection: not obviously wrong. Hastings Center Report 2002; 32(1): 23-28.
Watch: “Designer Babies” Ethical? L.A.’s Fertility Institute Says Prospective Parents Can Choose Physical Traits, Not Just Gender, from CBS NEWS:
1. Is it ethical to use preimplantation genetic diagnosis to select the sex of your child?
2. Consider the arguments presented about PGD and the ethical issues it poses in regards to disabilities. Does PGD reinforce a message about the disabled that, as disability activists claim, “negatively affects existing disabled people and fosters an increase in the oppression and prejudice from which they regularly suffer”?
3. In the video above, the doctor interviewed named Dr. Steinberg says, “Of course, once I’ve got this science (of PGD), am I not to provide this to my patients? I’m a physician. I want to provide everything science gives me to my patients.” Do you agree with Dr. Steinberg’s reasoning? Why or why not?
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