Health and Technology: Ethical Issues With Prenatal and Preimplantation Genetic Diagnosis by Professor Lawrence Nelson
“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 lnelson@scu.edu. 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
Background:
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.” [1]
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. [2] 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. [3]
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.
[1] 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.
[2] Ethics Committee of the American Society for Reproductive Medicine. Sex selection and preimplantation genetic diagnosis. Fertility and Sterility 1999; 72(4): 595-598.
[3] 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:
Questions:
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?
Leave your thoughts in the comments section below!
1. To answer the first question, it depends the individual, couple, or families’ motive to use PGD to select the sex of their child. If the family has a deadly, recessive sex-linked genetic trait that the parent(s) either have or know that they may be carriers, then in my opinion it is completely acceptable to pick the sex of the child. That is, if they are picking the sex of the child that is guaranteed to not have the disease. However, it then needs to be decided what is a “deadly” or incurable disease. Colorblindness is x-linked, it is incurable, but is it deadly? Is it a disease? More thought needs to be put into how society will view what is an acceptable “disease.” Lastly, I think I fall into the category that most individuals would on choosing the sex of a child because a family wants a boy to carry on the family name, or a girl because they may like the role that stereotyped genders give our society (i.e. self-sacrificing, quieter, less aggressive) – it is immoral.
2. I had never thought about the perception individuals who have a disability currently might view regarding this present discussion. I completely agree, it does seem that we, as a society, are saying that there are “desirable” traits and having mild retardation to Down syndrome is not one of them. In addition, where would the line be drawn for what is physically disabilitating? For example, would ADD be? And what if it wasn’t, would you tell those people currently living with ADD that they don’t have a disability and they should be able to hold their own attention? There are so many ethical questions that are stirred up by this question, that a few sentences are not enough to even begin to address them, and on top of that, it is solely only my opinion.
3. Yes and no. To an extent a doctor can be seen as a service job, in which case the customer or client (the patient in this case) can have what they want. On the other hand, you can never give everyone what they want. Sometimes, it is a case of not being able to, and sometimes it is because you ought not to. As a society, we need ask the question if designer babies are morally acceptable. Even though it is a start, it cannot just be me, a class of students, or a group of doctors and scientists deciding this. I can say that even though I see where Dr. Steinberg is coming from in giving his patients what they want, it sometimes is not the ethically correct thing to do. Just because science has made great advances doesn’t mean everyone should jump on the bandwagon.
I agree with you Richelle, I believe that the development of PGD is a technology that has inadvertently allowed society to become prejudice against human disabilities. Excluding extreme cases, like Lesch-Nyan, PGD has given humanity a tool in which it is able to make a choice whether a person will live or die due to properties that they see to be “unfit”. Justifying their decision on the child’s quality of life and burdens of living, parents may choose to cease the existence of that life and choose a physically fit child in its place in their pursuit of happiness. This right to choose a fit or unfit offspring shows that society has lost its empathy for those who are disabled. Moreover, where do you draw the line on whether PGD is justified for that particular disability? How much of a reduction in an individual’s quality of life justifies its disposal? Would you kill your grandfather because he has Parkinson’s disease and you know his quality of life will decrease dramatically over a few years? This is an issue that is not easily resolved and as this technology becomes available to more of the population, there must be policies in place to prevent the unjust disposal of life due to one’s own perception of a severe disability.
PGD has dangerous potential. Like most things involved in medicine, I am opposed to any use of PGD that is purely cosmetic or may do more harm than good. Even some seemingly good-natured potential uses for PGD are often unneccessary and unethical. For example, if we begin screening our children for diseases before they are born, where does it end? It has been proven that genetics only contributes partially to the expression of most diseases. In my opinion, there is no “perfect” human being, and PGD left uncontrolled will only present new problems.
PGD does have many positive qualities. If parents are both carriers of a fatal or devastating disease, PGD may prevent extreme suffering for the potential infant and financial strife for the parents. Women’s bodies have been conducting similar procedures since the beginning of humankind. If an embryo is too genetically flawed, the woman’s body will spontaneously abort the embryo. In my opinion, any use of PGD that extends too far from this natural procedure may become unethical.
When it comes to sex selection, I also think that it is only justified in the case of preventing a harmful sex-linked disease or disorder. Personally, I would never be able to choose the gender of my child, but I can understand how parents would want to for ‘family balancing’ or carrying on a name. But do mothers that have all male children love them any less than mothers who have a boy and a girl? Will a father love his daughter any less because she won’t pass on his name? I’d like to say no, but I have a feeling that in some cases there may be regret, disappointment or resentment. Another question is whether or not these feelings affect the children and parents more than the social consequences of wide spread sex-selection would. To me it seems unnatural to be able to choose gender for non-medical reasons, and this is one case where I don’t mind having reproductive freedom limited.
There is a difference between having a disability and having a disease that will either kill you or dramatically reduces your life span. As long as PGD is used to avoid fatal genetic problems I don’t see it as affecting people with disabilities in a negative way.
I can see where Dr. Steinberg is coming. What’s the point of sequencing the genome and continuing to do research in order to annotate genes and discover the basis for diseases if we’re not going to use that knowledge to save lives and help ease suffering? Unfortunately he was including PGD for ‘cosmetic’ purposes, which I don’t think should be widely used.
1. I believe that using PGD for gender selection is unethical except in cases where there is the incidence of passing on a harmful sex-linked genetic disease to a child. Choosing the sex of a child is immoral because at that time the parents are not thinking in the interests of the child, they are thinking of what they want their child to be. They are inadvertently putting expectations on the child before he or she is even developed to the fetal stage, based on the sex and the parents’ reasons for choosing that sex. Parents who conceive naturally also have some expectations from their children or an envisioned future for their child. But in the case of gender selected children the parents might be more disappointed as their “chosen gender” child may not turn out to be what they expected, despite the amount of money they invested in the procedure for sex selection. I think that gender selection may not be that big of an issue in developed countries like the United States where gender equality is more advanced than that in under developed countries like India where the male gender is perceived to be more valuable. Nevertheless, there do need to be laws regulating the use of PGD to select gender for non-medical reasons.
2. I do not believe that PGD is adversely affecting the disabled people or as the disability activists claim increasing the oppression or prejudice directed at them. We have the technology of PGD at our disposal and if parents have access to it they should use it to prevent the birth of a child in danger of developing a deadly disease. It would be wrong to bring a child into this world knowing that it would live a life of pain and suffering. The parents of the child will also be hurt looking at the pain their child is experiencing. I do not see the attitudes of society changing towards disabled people just because there are less disabled children being born. I also think that it is unfair on the disability activists’ parts that they are going against PGD based on the fact that because enough disabled children are not born in the future society will start to neglect the disabled.
3. I both agree and disagree with Dr. Steinberg’s statement that it is his duty to provide his patients with everything Science has to offer. This would be a good argument in the case of Molly Nash, where the doctors involved actually gave the Nashes a new option of using two different technologies together, IVF and PGD, which had never been done before. They were using everything Science had its disposal at the time. On the other hand, Dr. Steinberg mentioned the use of PGD for “cosmetic” enhancements, which I am not comfortable with. Using PGD in cases of deadly diseases is acceptable but I think it is completely wrong to choose a child based on physical attributes like eye color. Dr. Steinberg is right in providing all the available scientific options available for PGD but there has to be somebody to help manage parents as they process all of this information, think about the advanatges and disadvantages, and come to a decision about what they want to do. I agree with Dr. Arthur Capaln when he says that who gets to decide which hair color or eye color is better. I also like Dr. Arthur’s Caplan’s suggestion about parents receiving ample counseling before they make such decisions.
1) It’s hard for me to agree with the notion of PGD in general because although it has the ability to provide parents with healthy children it provides modern day parents with the avenue to choose.We would hope that physicians offering this technology are not knowingly offering PGD to allow parents to pick and choose certain traits, but that is in good faith. It would not surprise me that in countries like China that if couples have the money, they are able to select the gender of their child. PGD though a technology that can be used for good, it has the ability to be abused especially by modern parents who feel that it is within their right to choose what and who their child should be.For PGD in particular it is hard to set up middle of the way parameters before we start making far too many exceptions.
2) I would have the say that PGD might not adversely affect the disabled community, but it definitely has the ability to. If PGD becomes a societal norm, like getting a polio shot (until a new polio strain arises), polio becomes a thing of the past in a country like the United States. Those living with polio might not see the same attention to find a cure because the rest of society has found a “cure”. PGD might be another polio vaccine for the West in which it seeks to nip the problem at the bud.
3) Like Anikita, I agree that the duty of the doctor is to provide everything science has to offer within reason. Which is difficult to say because that leaves the burden of judgment on the physician.Somehow the line between prevention and superficiality has to be drawn for PGD.
1. Is it ethical to use preimplantation genetic diagnosis to select the sex of your child?
The issues surrounding the use of PGD for sex selection must be considered through two distinct ethical lenses. Through one, we must assess sex selection PGD as a diagnostic tool of medicine, which may prevent the transmission of genetic diseases from parent(s) to offspring. However, through the other, we must consider sex selection PGD a cosmetic and individual procedure, used only for the purpose of vainly choosing the sex of a child.
It is ethical to use PGD as a means to screen for sex if said screening is used to prevent the genetic transmission of a lethal or highly disabling disease. If used as a diagnostic tool, PGD has significant medical benefit. PGD allows parents to prevent the transmission of sex-linked disorders and/or the birth of a child with a life-altering disorder, which may result from an abnormal pregnancy. Thus, if a family has a familiar history of an X-linked disorder, such as Huntington’s disease, they may use PGD to screen for embryos that do not have the disease— proceeding to only implant the non-diseased embryos into the mother. However, the use of this type of PGD sex selection must be carefully regulated. It must be restricted to diseases that carry the risk of lethality or a probability of significantly affecting the life of the child. It cannot be used to screen for embryos containing genes for colorblindness, hemophilia, or other non-lethal disorders and thus manageable disorders.
Yet, if PGD sex selection is used for cosmetic reasons, it is not ethical. Choosing the sex of a child for cosmetic reasons assigns a value to one’s sex. If the child has a 50% chance of becoming a male or female, parents have generally have no preconceived expectations regarding the sex of their child. However, if a parent has the ability to choose sex, they may expect a child to live up to certain gender roles, to carry on a familial name, or to behave as the parents expect. Such expectations place a heavy burden on any child and therefore outweigh the reproductive freedoms associated with sex selection in PGD.
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”?
No. The use of PGD does not attempt to discredit the humanity of those who suffer from various disabilities. The disabled portion of society offers a dynamic level of diversity to our society, and puts in to perspective how fortunate those without disabilities are. However, I do not think that most disabled persons would chose to remain disabled if given the opportunity to alleviate their disability. The suggestion that PGD, a method of preventing genetically caused disabilities detracts from the quality of life for a disabled person then seems illogical. If these activists suppose that PGD increases “oppression and prejudice,” do not then, stem cell research, pharmaceuticals, and clinical medicine provide the same negative effects? These current therapies are in place to allow people to live healthier lives, in which they prevent disabilities; also, through their practice, they suggest that a non-disabled way of life is preferential to that of the disabled. New technology cannot be restricted under the guise that it may leave a portion of the population behind—for if it is, novel developments in therapeutics will cease, and we will have to revert to a primitive state of health care. PGD merely offers a novel way to prevent disabilities from occurring in the first place, and in doing such it does suggest that disabilities are not desirable; yet, it does not imply that we should divert current awareness or resources away from the disabled population.
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?
Physicians should most certainly not provide everything that science offers as a potential therapy or service for their patients. I agree that Dr. Steinberg should provide PGD to his patients; however, I do not support his decision to offer sex selection merely based upon cosmetic reasons—for my fore mentioned opinions (in question 1), I therefore stand solid with this position. Furthermore, I think it foolish to claim, as Dr. Steinberg has, that a physician should “provide everything science gives [him].” If this is the case, physicians should offer doctor assisted suicide, eugenic counseling, and other highly controversial practices. Often, as we discover more of the human body, we find systems, drugs, and tools that allow us to practice better medicine; yet, science has a dark side as well. As these technologies arise, we also gain exposure to the very technologies that may hurt us. Therefore, before any scientific and medical breakthrough is implemented within a clinical setting, it must be considered within the light of ethical analysis and assessed as morally and ethically appropriate.
How incredibly insightful!
I should hope so, old boy. Now, about your Oxford days…
1. Is it ethical to use preimplantation genetic diagnosis to select the sex of your child?
I think that in the case of sex-linked disorders it is morally acceptable to choose the sex of your child. However, in the case of merely preferring one sex over the other in a certain pregnancy without the risk of a sex-linked disorder it is a much more controversial issue. We must take into account the motives for why the parents would choose one sex over the other and the implications of doing so.
On a small scale, parents might choose to sex-select for a girl because they have had two boys already; they want to balance out their family and experience raising a girl. To me this is a valid argument. However, consider how the boys might interpret the fact that their parents do not want another boy so badly that they are going through all these measures to obtain a girl. Does this change how acceptable sex selection is when a disease is not in the balance? Here I might be tempted to say that the sex of any child (without the risk of a sex-linked disease) should be left to chance. This chance in giving birth to a girl or a boy is just one of many that parents take when conceiving a child and I believe that it is very important for the formation of relationships based on unconditional love within families. However, I realize that reproductive freedom is not something to be taken lightly or unnecessarily restricted. Realistically, I do not see the regulation of this practice within the United States anytime soon. Yet, this does not mean that we should not consider the problems that might arise as a result.
On a larger scale, unregulated sex selection might lead to an imbalance of the sexes within certain populations. In countries like China of India where the men are given more freedom and value than the women, who are viewed as subordinate or inconvenient this could pose a real problem. Already in these areas we see the abandonment or abortion of girls merely because they are girls. This has already lead to increase in crime and a large population of men who will never find a woman to marry. This severe lack of women leads to the view of women as a commodity rather than a normal contribution to society. Some would say that sex selection via PGD is just another form of sexism that would exaggerate the issues already plaguing society.
I agree that regulation of this would be almost impossible in the United States, as we have not found regulations for most technology yet. The only solution I see is to let people use sex selection even if others are morally opposed to it. Even if we try to evaluate the intentions of the parents, who’s to stop them from lying and saying that they are doing this to prevent any x-linked diseases, when really they just prefer all girls or all boys? No one can force them to screen for these x-linked diseases, and they could just say that the information came from the other members of their families. Of course, this is me being skeptical on the honesty and integrity of society, but I do not see a better way of going about this issue without proper regulation of this technology.
Just because regulations have not been used on past technologies does not mean we should not pursue them in the future. A part of moving forward technologically is being responsible for the use and proliferation of that technology. Unregulated sex selection could have drastic societal impacts. As it is customary in most cultures to prefer male children, the sex ratios would be thrown off. This could lead to more social issues such as increased crime, by young single men due to the simple fact that there are not enough women for the increased ratio of males. This is a very real consequence that needs to be avoided. And unless social norms shift globally to equilibrate the desire for male and female children, regulation is the only way to prevent this future.
I agree with Christine that it would be impossible to regulate sex selection in the United States, and I would even go as far as to say that there should be no attempt to regulate sex selection. Maybe I am a techno-optimist, but even if we get more males in the short term, wouldn’t that make females more “valuable” in the future? Using these types of arguments in favor of regulation is very difficult. It would be more appropriate to discuss the ethical implications in terms of access because before people will have a chance to impact society they will first need to have access to the technology.
I agree with everyone on this matter. Regulation is a very important aspect of new and currently used technologies. But as a techno-optimist, I believe technology should be viewed with a grain of salt and held with caution. A little fear combined with sex selection technology will go a far way in minimizing the risks to future generations.
1. Is it ethical to use preimplantation genetic diagnosis to select the sex of your child?
In order to discuss the ethics behind sex selection by PGD, it is important to look at what the couple’s motives are for choosing this method of producing a child. For example, a couple could choose to go through IVF and PGD to have a girl because the mother is a carrier of an x-linked disorder. Therefore, if this couple decided to have a child naturally, and had a boy, the boy would have the disease. By pre-screening for a female, this couple would see awesome benefits, not only to the potential child, but to the healthcare system as a whole. Preventing a child from being born with a debilitating disease would not only save the family a lot of time, pain, money, and suffering, but it would also save health insurance companies hundreds of thousands of dollars. Money spent on years worth of tests, prescriptions, and surgeries for this single child could have been saved if only they had screened for a female using PGD. Thus saving money to be spent on those whom are unable to have such a luxury as to screen for disease before implantation at all.
With privilege comes great responsibility. Therefore, although PGD is not something that can be offered to all because of its cost, those that can afford it could potentially free up medical costs to be spent on those that can not afford such treatment. Perhaps coming up with a better way to vaccinate the poor or even offer less expensive medical insurance to those who today cannot afford it because it is too expensive.
On the other hand, if the motive of the couple is to have a boy because they want to carry on their family name, or already have two girls and “need some balance,” I do not believe that this is an ethical reason to screen for a certain sex. Once the realm of choosing the sex of ones child for frivolous reasons, or rather for no medical benefit to the child, than we are opening up a Pandora’s box to designer children. The whole gender balance of society, when even tipped slightly in one direction, like in China currently, could mean disastrous consequences. Gender inequality in terms of the trafficking of women and increase in crime rates are two effects that have already been seen in many societies. Therefore the best way to deal with the issue of sex selection is on a case by case bases, focusing on the motives of the couple.
1) I am partial to how the blog laid this issue out, while it is ethically troubling, it is not innately wrong. The ethics of sex selection depends largely in the situation that the family is in. Biologically, the family could have a sex-linked recessive genetic disorder, and to avoid having the strong possibility of an afflicted son, will chose to have a daughter. In this way, sex selection works to save lives and avoid a potentially lethal phenotype. However, sex selection on the basis for societal status or advantages is morally wrong because you are denying the child a right to their own future. Another ethically troubling matter is there is no quantifiable way to determine if someone is selecting for/against a certain sex during the PGD process, unless they outright admit to it.
2) I never considered that the rise of PGD would instigate negative attitude to those currently disabled in today’s society. PGD will reinforce the message that being disabled is an affliction of the poor and inaccessible. It is saddening that PGD could not have helped those that are currently disabled. However, it is daunting because if PGD was used before their development, those disabled now would neither be implanted (thus not exist) nor have their genes altered, if applicable. As PGD becomes more widely accepted and practiced, unfortunately having a disability will become a stigmatism that indicates lower social statuses and limited resources.
3) Science has always had the mentality that progression should be made for the sake of progression and any advances should be used to the benefit of society. And to better society, medical procedures and applications must be accessible to the public. What Dr. Steinberg needs to remember is that just because science gives us freedoms into unknown areas, the public must be educated on the implications of their decisions. It is more than informed consent, but just that the community as a whole must be able to fully understand the consequences of the science. Ethics must race along with science and create rules and guidelines. Only then when everything is on the same page then can science be willy-nilly applied to the public.
1. Is it ethical to use preimplantation genetic diagnosis to select the sex of your child?
I agree with all of those who posted above in that using PGD to determine the sex of a child may be ethically acceptable when used to prevent the most severe types of sex-linked diseases. I also agree with those who stated that it should be legally regulated. Clearly there are a number of ethical dilemmas that are raised by the use of this technology for reasons other than the prevention of such diseases.
As Arthur Caplan said, “when you move away from diseases, who is to say what the better trait is? Those sorts of things are very subjective and in some ways driven by our culture.” From a moral standpoint there is a staggering difference between preventing debilitating diseases and “designing” your PGD babies. The former aims to protect the quality of life by ensuring a baby will be born healthy and disease-free while the latter turns the procedure into customized baby-manufacturing.
In terms of regulation PGD should only be legal to determine the sex of a child in the case that it can prevent a serious or debilitating sex-linked disease such as Huntington’s. Therefore any clinic performing the procedure should be legally obligated to test that the parents are carriers of such a disease before operating. The commercial use of PGD turns babies into commodities and takes us a step closer to a eugenic society.
Caplan also raised the ethical issue of access when he said that this use of PGD would be “something available to the rich and will not be something that the poor get to do.” Legal regulation could also help in this regard. The issue of access could be overcome if the government not only legalized the use of disease-preventative PGD, but also subsidized it for families of lower income.
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”?
Absolutely not; the use of PGD in this matter is actually contrary to such beliefs. When used to prevent the birth of children with disabilities it is not an act of oppression or prejudice, but rather an understanding of the difficulty and suffering that surrounds the lives of those born with disabilities and their families. The use of PGD to prevent future generations of suffering from such disabilities is a way of appreciating the gravity of the suffering itself.
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?
I strongly disagree with Dr. Steinberg’s reasoning because it carries no moral or ethical weight whatsoever. As a medical practitioner he should be obliged to practice and promote only the scientific techniques that are conducive to the health and well being of his patients (and their offspring). He should also not be permitted to blindly advocate such techniques without providing the family with all of the ethical background information necessary to make such decisions. Just because a medical procedure is scientifically feasible, does not mean it should be practiced without providing the participants with full medical & ethical council. I found it quite disturbing that Dr. Steinberg treated his patients more like consumers; as long as he provided them with the scientific tools he had available, he was happy to abstain from any ethical decision-making.
An interesting assessment.
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?
Absolutely not. Science has, for the most part, allowed humans to enjoy the quality of life we enjoy today. From the discovery and use of tools millions of years ago to relatively modern technologies such as computers or automobiles, science has generally improved the quality of life for people on this planet. However, there are certain capabilities that we as humans simply should not attempt to control. Let me be clear- I’m not saying PGD is a technology we should or should not attempt to control, simply that there are certain abilities that should be beyond our scope of control as humans. Nuclear bombs, reproductive cloning, and in the vein of Frankenstonian hubris, the ability to control life after death. Granted, the last example isn’t a currently viable technology, the point is that there are certain powers we simply ought not to have.
That is not to say we shouldn’t develop these technologies- simply that we should not necessarily use them. Nuclear technology has since given physicists the ability to simulate infinitesimally small subatomic events that have given us a better understanding of the world around us. Cloning may be used for therapeutic uses to provide viable tissues in patients who need organ transplants. The potential for future knowledge provided by these technologies merits continued research in their respective fields, but we must learn to draw the line between knowledge and application of that knowledge.
Furthermore, simply because something exists does not mean we as humans are entitled to it. Too often in this information age do people become complacent with amenities that would have been nothing short of a miracle even a decade ago. This is especially crucial with the rapid filling in of the gaps in our knowledge of the human genome and PGD. The ability of PGD to identify sections of our genome is expanding every year. How long will it be before we can identify and select for or against the genes coding for eye color, or- if it exists- the gene(s) responsibility for homosexuality. Those with access to the greatest privileges have the tendency to take those same privileges for granted and tend to use them for vanity. PGD is a powerful technology that has the capability to help many families with a history of devastating genetic disorders, but also has the power to sacrifice thousands of embryos in pursuit of vain cosmetic and non-necessary procedures.
In short, we are not owed anything by science, but rather should respect the power that it has to improve our lives and to use that technology only when necessary.
I agree that there are certain technologies that humans should not try to control. However, I do agree with what Dr. Steinberg is saying. He is a doctor and he has a duty to heal the sick and help those that are in need in any way that he can. If a technology comes along that enables him to carry out his duties as a physician, he cannot ignore this opportunity. On the other hand, he has just the same duty as a physician to do no harm. In this sense, if a technology comes around that he feels would do less benefit than harm to his patients, he has the right to not allow his patients access to this technology. I think the way that Dr. Steinberg phrased his statement was inappropriate because it makes it seem like he would allow the science in any circumstance; however, I believe that he meant this within the context of the science providing benefit to his patients in which case I do agree he has the duty to provide the option of PGD to his patients.
I agree initially that technology should not be used for the sake of technology and advancement. But as Emily says doctors are obligated under the Hippocratic oath to do all within their power to heal the sick. So there needs to be instituted a division between taking risks with a patient’s life with a uncontrolled technology and just using the technology for its own sake.