By: John Van Swearingen, Student at Wake Forest University School of Law
John Van Swearingen is featured in our Author Spotlight section. You can read his interview about his piece here.
Let us assume that Plato and Socrates were alive today, and they sat down together after an enlightening Bioethics class to discuss the topic of the day one-on-one. Ever the obstinate instructor, Socrates has committed himself to challenging Plato’s thoughts every step of the way…
P: What shall we talk about today?
S: The future of embryonic research in assisted reproduction.
P: Well, what about it?
S: What are your thoughts on the future of Preimplantation Genetic Diagnosis (“PGD”) in the United States?
P: PGD, in the context of assisted reproduction, is the screening of artificially-fertilized embryos for the genetic markers of diseases, birth defects, and other infirmities in order to ensure the implantation of the healthiest embryo possible. It is not gene editing or embryonic enhancement. It is the informed selection of healthier embryos, a logical extension of medical treatment. It may lead to the long-term mitigation and eventual eradication of diseases and birth defects.
S: PGD, in the context of assisted reproduction, is modern eugenics. It will give those who can afford such technology will gain a new advantage over those who cannot. Further, it will lead to increased marginalization and reduced accommodations for the handicapped. PGD opens doors to decreased genetic diversity, and removes from the child the prospect of self-determination. It is not medical treatment.
P: Well, clearly, one of us is wrong.
S: I think it is you. The lens of history has not been kind to eugenics programs, and among its many evils, PGD is a form of eugenics.
HISTORY
P: You keep saying “eugenics” like it is a dirty word. Before the term became associated with Nazi Germany and race-based American laws in the first half of the twentieth century, it represented progressive hope in public health improvements and scientific development. In that earlier, hopeful definition, PGD could actually be a form of eugenics. In the context in which you have framed the word “eugenics,” PGD is something different. It represents a new way of limiting the prevalence of disease and birth defects in the generations to come.
S: I have a hard time ascribing such positive notions to a medical technique that essentially tells those with birth defects – those with mental infirmities, diabetes, deafness, other chronic conditions – that they have no value. By advocating for PGD, you are saying that you want these people eliminated from our population. Just like the advocates of eugenics programs in the 20th century, you are standing on pedestal over these people and saying they have nothing to offer.
P: On the contrary, I believe every human life has value. However, there are conditions – conditions that, historically, medical science could not treat or alleviate – that inhibit those lives from being able to be, for lack of a better phrase, a full representation of human potential. PGD can mean the elimination of conditions like Down’s Syndrome, deafness, and PGD can even be used to spot genetic markers for cancer. With PGD, children conceived with assisted reproductive technologies can be born with a reduced risk of defects and disease both at birth and later in life.
S: But how is this different than the American sterility programs that have come to be synonymous with the term “eugenics”? Less than ninety years ago, in the Supreme Court case Buck v. Bell, a mentally-handicapped woman – deemed an “imbecile” by the Court – was sexually sterilized by the State of Virginia. The Court callously justified that preventing Ms. Buck from breeding was for the good of the public welfare, stating “[t]hree generations of imbeciles are enough.” Permitting PGD is a tacit admission that eugenics programs are morally sound provided they only target the unborn.
P: PGD is distinguishable from historic eugenics programs in that no one has procreation taken away, no one is forced to undergo operations against their wishes, and, frankly, no one is mandated to do anything by the government. In fact, since PGD involves assessing embryos in the pre-implantation stage, no human beings are negatively affected by the process.
S: I am glad that you phrased your point that way. I will concede that PGD is distinguishable from historic eugenics programs, but you have raised two points of immense social concern. First, some people define embryos as a human life. Second, the widespread implementation of PGD has the potential to negatively impact the lives of disabled people in our country.
SOCIAL
P: To your first point, I do not think we can reconcile that question here or, frankly, ever. There are a fair number of people with strong religious convictions that say, “Life begins at birth.” However, our laws still recognize that a woman has the right to terminate a pregnancy. See, for example, the Whole Women’s Health v. Hellerstedt decision issued by the Supreme Court this year, which reaffirmed that right. The disposal of unused embryos in the PGD process (those embryos bearing harmful genetic markers) is even further attenuated from the loss of a potential life than the abortion process. Provided current laws towards abortion remain the law of the land, the wholly elective process of PGD in assisted reproduction will pose no greater moral dilemma. But, you make a fair point, and it cannot be resolved.
S: My second point is valid as well. If there is any long-term negative impact from PGD, it will be the increasing rarity of disabled persons. The fewer and further between these individuals are, the less likely, it seems, that society will be willing to accommodate their needs. The deaf, for example, are quite arguably a community that can function in our busy world thanks to accommodations and technology. If persons born deaf or persons knowing they carry the genetic markers for congenital deafness are able to eliminate the occurrence of that condition, the deaf population will inevitably shrink over time. After a certain point, technology and society will leave them behind, and there will be no significant community left to lobby for their needs.
P: That’s a rational concern and a compelling one at that. However, to what extent does one evil outweigh the other? If the increasing rarity of a condition is correlated with that condition’s eradication, do we have a moral obligation to keep that condition in the human race in perpetuity? If the goal of the medical sciences is reduction of harm and suffering, as stated in the ideals of texts like the Hippocratic Oath and the Nuremburg Code, can we ignore that the technology behind PGD would give parents the option of ensuring that those conditions do not occur in their children?
S: I suppose we could not, but we also cannot operate in a vacuum that ignores the potential for collateral harms to others. If the result of PGD is decreasing the population of the disabled community, how can our society, which values diversity, support the process?
P: Not to be callous, but if we concern ourselves with social concepts like diversity, do we not create the potential to lose sight of the forest for the trees? In other words, if we had the ability to effectively eliminate, or greatly reduce, a large amount of birth defects and other diseases, would we consider that loss a detriment to our country or our species?
S: We very well may, but I have two principal concerns regarding diversity. First, if we assume that genetic markers could be found for all diseases, would we consider conditions like autism spectrum disorders or genetic markers indicating propensity for schizophrenia matters of mental defect or mental diversity? At one point, we may even discover genetic markers for conditions like ADHD, if we have not already. If we are not careful, PGD can blur the line between preventing birth defects and controlling aspects of human personalities. Second, how can we set social or legal controls to prevent PGD from limiting aspects of human diversity like height, race, gender, or sexual orientation?
P: Well, let us look at your first concern. Do you consider muscular dystrophy, anencephaly, and cancer to be markers of valuable human diversity?
S: No.
P: Okay, so we are in agreement there are at least some diseases that, if the genetic markers were present in some embryos but not others, you would be comfortable with the decision to only implant those without. In the case of certain developmental conditions – conditions that otherwise would fall under the umbrella of “mental illness,” like those you pointed out – there is far more grey area. Arguably, there are certain personality traits that may be considered an eccentricity by some but illness by others. As the advocate for PGD, even I cannot propose a universal sense of “equivalency” between all forms of potential conditions. Still, I do not believe that the difficulty of the distinction renders making just and ethical decisions impossible in all cases. May I pose a hypothetical?
S: Certainly.
P: Say a man and a woman want to begin an assisted reproductive process with PGD. The man suffers from schizophrenia, which is controlled effectively with medication and monitoring. His father, however, had a more severe case of schizophrenia, and several years before, took his own life because of it. If the medical community could ensure that the child of this man and woman was born without the genetic markers for schizophrenia, would you find him morally or socially deficient?
S: I could not.
P: If there were some requirement through regulatory controls in the medical community, through statutes, or based in common law adjudication, to require case-by-case analyses for the types of close-call conditions (perhaps, for example, based on the parents’ intent), could that assuage your concerns in that arena?
S: It could, but I am still nervous about the potential for politicized judgment calls to shape the debate about where our country could draw the line between personality and disorder. We could discuss this issue ad nauseum and die before we find a best answer for all in society. However, my second issue remains unaddressed. What of the potential for gendercide, the ability to determine a child’s sexual orientation, or the manipulation of non-medical physical characteristics?
P: Ah, yes. To some extent, it seems you are concerned with the potential for “designer babies.” Can I play devil’s advocate?
S: No one is stopping you.
P: First, PGD is, as stated before, not gene editing or enhancement. Second, we arguably already “design” our babies. We seek out the most attractive mates possible given our own aesthetics and preferences, we seek out healthy and accomplished partners, we exercise for aesthetic reasons, and, not to mention, we live in an inherently unequal world. Those of financial means can send their children to the best schools. They can afford the best medical treatments, cosmetic surgery, and the highest quality food. If we permit PGD to be used electively to “design” the best baby possible, how is that fundamentally different from the myriad ways in which we, according to our own circumstances and capabilities, “design” ourselves?
S: There is an inherent argument about autonomy, and, not to make an opaque existential inquiry, it concerns whether or not the child exists for its parents’ sake or for its own. I argue that, if PGD is used to determine aspects of the child – beyond those that the serendipity of life assign to the child when the parents’ gametes combine – then the child has effectively been objectified by science. Not to mention, this use of elective PGD raises concerns with growing divides between social classes. Why should medicine, in its goal to improve the lives of all, permit the rich to ensure that they have intelligent and athletic children, devoid of physical flaws as well as health issues, while the poor bear children with characteristics determined only by chance?
P: I think you have, for lack of a better phrase, hit the nail on the head. After a certain point, PGD has the potential to transcend the boundaries of medical ethics and become socially unjust. The primary focus of PGD should first, foremost, and always be the prevention of diseases and genetic disorders at the earliest stages of human development. To address the other issues you raised earlier (sexual orientation and gender selection), I would propose that these considerations should be almost entirely off the table as well. Again, the focus of PGD must be medical.
S: Why qualify gender and sexual orientation as “almost” entirely off the table? They should never be considered for manipulation through PGD.
P: I agree with you concerning sexual orientation. That fringes too far into the boundaries of a child’s self-determination. However, biological sex and gender, which I will refer to specifically as “gender” notwithstanding expanding social understandings of the concept, may be relevant for the purposes of family balancing. Is it so immoral for a mother of two boys to want a daughter, or vice versa? Is there any harm to society if parents, through assisted reproduction, can with certainty choose to raise a family of brothers and sisters?
S: No, but we must consider the social impact if assisted conceptions with PGD are skewed more towards one gender over another.
P: What if it does? Would you have the government or some regulatory authority step in and impose a gender on parents undergoing assisted reproduction all in the sake of balance?
S: Probably not.
P: Remember, PGD, in the context in which we are discussing it, will only apply in medically-assisted reproduction, and it is aimed primarily at preventing the implementation of embryos that carry genetic defects or markers for disease into a mother. In this consideration, the technique will be applied to couples who know they are carrying markers for a disease or genetic defect. Because of cost and the various normative social attitudes towards assisted reproduction, it is unlikely that the number of children conceived with PGD will meaningfully alter the gender distribution of our country.
S: There is another limiting factor that we have not discussed: cost. We are discussing a novel, controversial, and – importantly – elective procedure. Are you concerned in any way about this procedure being available to only the rich? Not in the context of designer babies or unfair advantages, mind you. I am referring to those with means and a genuine concern regarding a genetic disease or conditions as compared to those with the same concerns but fewer resources.
P: Well, that gets into a broader debate about whether or not access to all measures of healthcare is (or should be) guaranteed by the government… for another time perhaps. I do not believe that PGD is unique; all medical treatments come with some inequity in the “quality of care” available. People of means can afford the best care and procedures, and people without means simply will not. It seems unfair, but the alternative is imposing the burden of providing access to the highest-feasible quality-of-care to all on our nation’s healthcare infrastructure and tax-base. The United States has not yet chosen to go down this path. Regarding PGD specifically, only a portion of states currently mandate that insurance providers cover assisted reproduction. Presumably, time and shifting public attitudes could expand coverage for assisted reproduction procedures, including PGD. The costs and benefits of PGD are also arguably less expensive over time than those associated with managing a serious genetic condition over a lifetime. It is a one-time expense that can help prevent, for example, the lost employment opportunities that would come with a condition like deafness.
S: Should people, who can afford to do so, be permitted to purposefully to select an embryo with some form of genetic defect, like deafness?
P: This has already been done, and it was done without the assistance of PGD. In 2001, a deaf couple in the United States utilized a deaf sperm donor (with several generations of deafness in his family) to conceive a deaf child. To answer your question, the best answer is, “It depends.” Some conditions, like deafness, come inextricably intertwined with certain hardships throughout life, but the condition imposes no direct pain or suffering on its own. If parents, for one reason or another, wanted to conceive a child specifically with cystic fibrosis or genetic markers for cancer, that would be a bridge too far. Forcing suffering onto a child for the sake of the parents… that seems directly opposed to the medical principles of justice, autonomy, beneficence, and nonmaleficence.
S: Well, it seems that PGD just opens up a world of ethical and regulatory dilemmas to an already-complicated universe of medicine. How have other governments handled this issue, and is there any way for the legal system to accommodate growth in the field of PGD?
LEGAL
P: Let us look at the United States first. There is an utter dearth of law regarding any embryonic research or experimentation. In 1995, the federal government passed a law prohibiting the federal funding of embryonic research. For twenty-one years, private funding has supported all research in this area, and it has been regulated only by professional organization guidelines and scattered state statutes. Scholars have described it as “the wild west” of medicine. In contrast, PGD is banned or highly regulated, sometimes by a central national authority, in several European countries. Some of these bans are directly related to historical concerns about the use of eugenics during the Nazi regime, and others are rooted in constitutional declarations that embryos are human beings.
S: Well, isn’t a ban a viable option? Given the historical and social controversies associated with PGD, the easiest legal solution would be banning the use of PGD.
P: Easiest, yes, but that would hardly be reasonable. The “cat is out of the bag,” so to speak. PGD has the potential to help individual families ensure that children are born with a greatly-minimized risk of health issues, and thus lower the prevalence of genetic defects and diseases throughout our society as time goes on. The United Kingdom, for example, uses a national licensing authority to oversee the administration of PGD in assisted reproduction.
S: How long have they been doing that?
P: Almost as long as the United States government has banned federal research funding. The UK Human Fertilisation and Embryology Authority (“The Authority”) does more than issue licenses to practitioners in reproductive medicine. The Authority oversees case-by-case adjudications for couples wishing to utilize PGD in assisted reproduction. Further, by overseeing research in the field, the Authority is able to hold periodic public consultations on the technological advancements, potential uses, and potential limitations surrounding PGD.
S: We do not have a nationalized healthcare system, and we are a much larger country than the UK. In addition to our federal law, we have fifty different states, each with its own body of substantive laws. States have different laws and regulations governing abortion, for example. It sounds far too complicated to work.
P: A federal regulatory solution may be the best option for the United States. The Supreme Court has established and upheld federal regulations governing abortion through constitutional due process claims and upholding the Affordable Care Act as an exercise of federal taxing and spending authority is indicative of an expansionist view of federal oversight in healthcare. Additionally, the Commerce Clause of the Constitution provides potential teeth for regulation given that researchers, doctors, and patients may find themselves crossing state lines in activities related to PGD. Having inconsistent state laws could give rise to medical tourism and contradicting state interpretations of vague terms.
S: Even if the ban on federal embryonic funding were lifted, permitting federal oversight over relevant research, and even if a federal regulatory scheme were implemented to permit regulation and review of PGD in the United States, there are still other legal issues. We are talking about human embryos. How will patents come into play? Will there be a market for people to patent gametes or embryos deemed superior to others?
P: There certainly may be grounds to patent technologies and processes related to medically-therapeutic PGD. However, one of the considerations of granting a patent is the usefulness of the invention, which also carries a judgment of social and moral value. The nontherapeutic application of PGD that we discussed before (for example, aesthetic selections in embryos) raise the same concerns with regard to patents. Given the value judgments that must go with approving a patent, it seems unlikely that the Patent Office would grant a patent for “designer genes,” natural or synthetic.
S: This all sounds very speculative.
P: It is in many ways. Like I said before, there is not a lot of law concerning PGD here in the United States, but it has the potential to do a lot of good for society. Again, notwithstanding the legal regulations, the professional organizations that license doctors to practice have their own governing ethical guidelines. Providing services for PGD that do not meet organizational standards of ethics could result in sanctions for doctors, including prohibitions from practicing.
S: I am still uncomfortable with the concept on a fundamental level.
P: Well, would you agree that the medical use of PGD in assisted reproduction is different than the historical examples of eugenics in the United States and Germany?
S: Yes, it seems different enough. To me, it does not involve punishing or harming a person in any way. It also does not seem focused on eliminating “undesirable” people, only conditions. However, I think there will be people, for faith-based reasons or otherwise, that will protest the disposal of fertilized embryos.
P: Those same people propose the legal abortions that happen every day, despite those abortions being permitted by law. That debate, it seems, will outlast our grandchildren’s lives. Would you also agree that your concerns over the social ramifications of PGD have been sufficiently addressed?
S: I think I can agree to disagree. I see value in the points you have raised, but I am still worried about persons already living with birth defects, genetic disorders, and diseases. However, given the limited application of PGD only to assisted reproduction, it seems unlikely that the reduction of these conditions will happen so precipitously that the populations living with those same conditions will become marginalized. However, as a society, we cannot let afford to let our disabled communities become “out of sight, out of mind.”
P: Agreed. Would you also agree that, given the potential for the good that can be accomplished with PGD, a federal regulatory scheme loosely modeled after the United Kingdom’s regulatory authority would be preferable to an outright ban on PGD?
S: It seems preferable to an outright ban. However, the first step will be convincing Congress to repeal the ban on research funding.
P: I’m glad we had this talk.
S: I am as well.
Awaken 