American Journal of Law & Medicine

They Chose ... Poorly: A Novel Cause of Action to Discourage Detrimental Genetic Selection

I. INTRODUCTION

With current technologies, putative parents have unprecedented opportunities to select, within limitations, one or more genetic characteristics for their next generation. (2) But, as we continue to tease out the genetic and/or epigenetic basis (3) of more diseases, conditions and traits, we raise ever-more complicated ethically and morally questionable options in selecting for and/or against particular traits. In particular, what ought to be the litmus test, if any, in deciding which genetic disorders are "bad enough" to select against, or even to provide government assistance or insurance coverage for those selections, and what non-therapeutic genetic conditions should ever be positively selected for (4) with or without reimbursement from insurers?

Particularly troubling are instances wherein parents might select a seemingly objectively disabling trait for their child. For example, individuals from the deaf, high-functioning-autistic, Asperger's, dwarfism, and other non-typical (5) communities, who might take particular pride in their condition, (6) might employ assisted reproductive technologies (ARTs) to select for an embryo that will result in a child who is similarly disabled, an option still legal in most jurisdictions. The ethical and moral concerns notwithstanding, economically, with costs of health care, therapy, and the like often spread broadly across society, should parents have the right to knowingly inflict such costs on society? (7) For example, all the positive aspects of deaf culture aside, deaf children are likely to have access to substandard education and graduate substantially behind their peers, and are thus given systematic head start in becoming a burden on society. (8)

In the alternative, in a discussion beyond the scope of this article, society benefits from having individuals with these types of conditions. Arguably many great artists and intellectuals owe their genius to their genetic conditions, that otherwise provided them with poor health. (9) Perhaps parents might be providing a benefit to society by actively promoting such births, and as a corollary, are parents that actively seek to prevent such children from being born, actually harming society? Under this premise, the effect of the individual decision to have a healthy child and not one carrying a genetic and undesirable trait is rational and moral, but the sum total of these decisions amongst society, may not be rational, moral, or even desirable. (10)

The issue of parents purposely selecting to have children with disabilities is a far cry from impossible. Perhaps most (in)famously, the issue was raised over a decade ago by a deaf couple (11) that intentionally sought out genetically deaf sperm donors so that their children could similarly be deaf and be part of what many consider to be a worthwhile and distinct culture. (12) Similar feelings of pride are paralleled for those living with other conditions that many would consider to be a disability, including for example, dwarfism, (13) cystic fibrosis, (14) phenylketonuria, (15) Celiac disease, (16) and high-functioning autism spectrum disorder. (17)

With the growing knowledge of our genome and how individual, groups of genes and now even junk genes (18) relate to and interact in complex diseases and human conditions; the advent of whole genome preimplantation genetic diagnosis (PGD) on the horizon; and the development of live cell genome editing tools such as CRISPR-Cas9, (19) we can expect to soon see parents using advanced artificial reproductive technologies to select for children with disabilities, as the deaf couples did using low-tech ART. In fact, two new books detailing the legal and ethical concerns relating to emerging reproductive technologies also hint to the potential possibility that a parent might choose to specially use genetic technology to have a disabled child. Both books unfortunately fail to hone in all the way on this potentially troubling likelihood. (20)

Currently, a child born from a situation wherein their parents have chosen them to have an undesirable genetic condition has little legal recourse. And it is not clear that they should: in many countries a parent's reproductive autonomy is a nearly inviolable basic human right. However, parental rights vis-a-vis their children's are not absolute; there are numerous state statutes dealing with child abuse and neglect, (21) reflecting a broad societal consensus that on many occasions the interests of the child should take precedence over the rights, desires or needs of the parents. (22) Here too, children ought to be protected from the arguably misguided and potentially even capricious, prenatal whims of their parents.

The only existing option for these children is the Wrongful Life legal cause of action. (23) Available in vanishingly few jurisdictions, (24) it actually provides little deterrent for parents and their physicians from making objectionable reproductive choices as the very philosophical and legal contortions necessary to affect this option limit its usefulness. As such, in its stead, we argue for a "Wrongful Selection" legal cause of action, one that circumvents all the problems of the aforementioned predecessor. This cause of action would be useful for those children whose parents, with the help of clinicians, egregiously (e.g., for the specific purpose of having a child with the same disabilities as themselves), maliciously (e.g., by a parent suffering from a form of Munchausen syndrome by proxy (MSBP or Factitious Disorder Imposed on Another (25)), or perhaps even negligently (e.g., selecting a child solely for a non-health related trait, such as eye color, without determining first if that embryo had any disabilities that were not present in the unselected embryos) selected for a genetically controllable trait that a broad consensus of society would agree has a detrimental outcome for their child. We outline the legal ethical and social concerns that need to be addressed to create this possibility and to protect future generations.

This is not merely an academic exercise. While sparingly few governments have addressed the particular concern of this paper, (26) commonly cited statistics suggest that at least three percent of fertility clinics in the United States have encountered and actually allowed couples to select for an embryo particularly because it had a non-therapeutically related trait, (27) for example, even a negative trait. While admittedly we hope that few, if any, parents might avail themselves to such an effort, the concern remains real and possible. (28)

The first section of the paper will outline the particular problem associated with parents choosing negative traits for their children. Section two will provide a brief outline of the relevant technologies, including diagnostic technologies like preimplantation genetic diagnostics and editing technologies like CRISPR. In the following section we provide reasons why parents need to take the decision of selecting or altering their child's DNA carefully. We follow this up with the fourth section on the current state of the law regarding PGD. Section five introduces our proposed cause of action - wrongful selection, particularly as it relates to the often maligned and embattled wrongful life cause of action. The sixth section provides more detail as to the mechanics of the wrongful selection cause of action, including defining difficult terms and the importation of legal mechanisms such as qui tarn to make the cause of action more palatable to many stakeholders. Finally after our conclusions, we provide draft civil jury instructions.

II. THE CONCERN

The Internet is full of ironic and sarcastic "Parent of the Year" memes that shame parents for their abominable parenting choices. So it should come as no surprise that there have been instances where parents have, perhaps with good intentions, negligently, or even maliciously (although it may be hard to distinguish between these intentions after the fact), actively sought to use artificial reproductive technologies (ART), particularly emerging genetic engineering technologies, to ensure, for non-therapeutic reasons, that their offspring have a particular genetic condition.

Succinctly, our position is, as the Justice Rutledge so eloquently put it: "Parents may be free to become martyrs themselves. But it does not follow they are free ... to make martyrs of their children." (29)

With any form of genetic engineering, even the benign use of preimplantation genetic diagnosis (PGD), the process of creating a child is fraught with ethical and legal concerns. (30) So the use of these technologies are all the more disconcerting when their intervention purposefully results in a what we will call, for lack of a more precise term, an 'injured child,' - one that many, if not a vast majority, would consider to be congenitally predestined, by human ART intervention, to be disadvantaged or disabled. (31)

For example, in the currently most technically feasible scenario, (32) parents undergoing in vitro fertilization (IVF) might actively and knowingly chose to implant a particular embryo, from a set of potential embryos one or more in vitro fertilization cycles, representing a future injured child. (33) Or even, perhaps in the near future, intentionally introducing non-therapeutic genetic engineering technologies into their gametes or IVF embryos, all in an effort to create a particular child with a particularly genetic trait. (34)

For example, parents who might want to have a deaf child could specifically select for an embryo that carries a variant of the Connexin 26 gene, like the variant GJB2, (35) known to be responsible for a large percentage of congenital deafness, specifically, recessive hereditary bilateral deafness/hearing impairment (DFNB1). (36)

This is arguably unfair to the child. Feinberg postulated that every child has a moral right to an open future. (37) Others see at least a right to a decent life free from having important life choices dictated by others. (38)

Moreover, some form of that aforementioned right is impinged, and a duty breached, we argue, when parents actively choose, specifically through ART intervention, to birth a disabled child. (39) Parents may have duties (at least parental neutrality) to their sires, (40) and many courts have argued that "... there is a right to be born free of prenatal injuries foreseeably caused by a breach in duty...." (41) In such a case, a parent's duty of say, procreative beneficence, wherein the parent has a moral obligation to "select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information," (42) has been breached. (43) Further, this breach of procreative beneficence also directly results in an impingement of the child's right to self-determination. (44)

More concisely, our concerns arise when parents actively use technology in an effort to have a child with a particular genetic trait. But not all genetic traits are equal. Whereas some genetic traits are relatively benign, others somewhat neutral, others seemingly obviously beneficial, and other traits are plainly detrimental to the life of an individual, there are a number of traits that most, but not necessarily all, people would consider to negatively impact the quality of life of an individual. It is particularly these latter traits that raise legal and ethical concerns described herein when an embryo is selected (currently via PGD, but in the future, perhaps via other technologies) expressly because that embryo had those traits. With little academic research even acknowledging this scenario, this paper will seek to develop a model law that could be implemented to prevent what might be considered an immoral or at least, unfair, use of current reproductive technologies.

Addressing the use of ART to select a disability to injure a child, or negative selection, and its consequences is non-trivial: there are particularly complex issues relating to strictly defining the term 'disability' as well as the metes and bounds of unwarranted genetic intervention. And courts and scholars alike have struggled with determining what actual tortious harms can be said to have befallen an injured child, who, without having been selected via ARTs might otherwise not have been born at all if not for their parents' meddling.

Thus, while throughout the Article we use the short-form 'injured child' to refer to the child who is congenitally disadvantaged or disabled, arguably by a legally cognizable harm, we are cognizant of the many complicated issues as to whether there is actually an injury or the nature of the injury and how such an injury is perceived differently by the child, their family, and/or parts or most of society. We are also cognizant of issues relating to how the labeling of any condition as a disability is itself fraught with numerous ethical, legal, moral, and social concerns.

Still, with these caveats, readers may have other concerns. Some may be upset at the lack of disability sensitivity of the proposal. In general, many within disability communities claim that PGD and similar technologies devaluate them as human beings, and more hurtful, that society sees their birth as an avoidable mistake. As a result, many within the disabled community claim that that the world would rather invest in solving the problems of disability through prenatal decision making rather than improving the inhospitable world that many people with disabilities occupy. (45)

This proposal, they might argue, is even worse as it fails to see that parents who actively use ART to create an injured child, truly see this injury as the optimal outcome for their child. (46) However, while some have argued that the current social conversation may include a right to have or even induce disability, (47) it is unlikely that a similar paper would be written for finding a right for deaf children to demand cochlear implants from their deaf parents, (48) or to find that these parents are in violation of some abuse or negligent statute for denying them. (49)

Others may find moral fault in the parents, but will have a hard time finding that the efforts actually harmed a child, for numerous reasons described herein. (50) Further, and perhaps more troubling, many might wonder what makes ART different from natural efforts of conception such that we don't find it problematic that deaf individuals would even seek out other deaf people to naturally have children even though there is a high likelihood that those children will also be deaf. Concisely: in the former we note that there ought to be limitations in parental autonomy in raising their children; in the latter we acknowledge the universal rights of reproduction and privacy.

However before these concerns can be addressed more thoroughly, it is important to first appreciate the various technologies being employed.

III. THE RELEVANT TECHNOLOGIES

Nearly a decade ago, Professor Kristen Rabe Smolensky examined the potential for government intervention to prevent parents from selecting a negative trait for their unborn child. (51) That paper resulted in a handful of responses from her colleagues, including Professor Jaime King. (52) Notably however, none of the papers came to an adequate solution for what was then, basically, a thought experiment. Today however, nearly weekly advancements in science and technology have made the possibility of a parent choosing a child for their negative traits an easier process. (53) Moreover, with the introduction of viable genetic editing technologies, we will now see the problem grow more complex with the possibility of not only indirect intervention, but direct intervention as well. (54)

A. PGD

Couples undergoing in vitro fertilization (IVF), (55) that is, in a nutshell, the mixing of sperm and egg outside of the human body for re-implantation of a multi-cell pre-embryo, have had the option for some time to elect to choose, from limited options, what child they want to have. In the IVF procedure, eggs are harvested from the mother, or in some cases of maternal infertility, a maternal donor. (56) Sperm is introduced into the egg and clinicians allow the new embryo to grow outside of the uterus for three to five days before freezing or implanting the embryo into the birth mother. (57) In 1990, a group of London-based researchers employed a technique, implemented on day three of the embryo culture, to aspirate one or two cells from the embryo. (58) The embryos belonged to two pregnant women who were at risk of transmitting a sex-linked disease to their putative sons, but not their daughters. (59)

The cells were examined for the presence of the Y chromosome--the chromosome responsible for determining that the sex of the eventual child will be male--and only those embryos lacking the Y chromosome, i.e. only those embryos which could develop into girls, and therefore free of the genetic disease, were implanted into the mother. (60) This was the first documented instance of preimplantation genetic diagnosis (PGD) on a human. (61)

PGD is a useful alternative to prenatal and postnatal testing. In some examples, couples are tested prior to marriage, in the hopes of preventing the marriage of two carriers for a disease. (62) In this instance, the goal is to prevent even the conception of a child having a genetic disorder. In other instances, couples rely upon chorionic villi sampling and amniocentesis, among other testing options, (63) to determine whether a child already conceived but still in the first trimester, was likely to present a particular disorder. (64) Here, the goal is to provide opportunity to abort a child with a particular genetic disease, at a relatively early stage of the pregnancy. In other instances, newborns are tested for common treatable genetic diseases in the hopes of providing early treatment or preventing further health problems from arising. (65)

Like many forms of ART, PGD has always carried ethical and moral concerns, some implementations of the technology being substantially more disconcerting than others. (66)

PGD has typically been particularly relevant for couples who want to avoid the physical and emotional trauma of terminating a pregnancy after finding out that the embryo carries a particular genetic trait or disorder. (67) PGD has been proven to be helpful in a number of straightforward and sometimes ethically questionable circumstances. …

Log in to your account to read this article – and millions more.