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specializing in personal-injury law, argues that such an approach can be found when the wrongful life is analogized to the circumstances present in right-to-die cases.113 Although courts have been reluctant to compare the value of a lived-but-deficient life to a hypothetical non-life, many have clearly recognized that, to some, non-existence is preferable to existence.114 Because many of the terminally ill or profoundly disabled who are at the center of these cases are incapable of exercising their own judgment, courts have crafted the substituted-judgment doctrine—a legal fiction that provides that an otherwise incompetent patient can, through a proxy, refuse medical care that would prolong the patient’s life.115 As Belsky explains, The significance of [In re] Quinlan’s substituted judgment approach to the wrongful life action lies in the inherent notion that action upon the patient’s unexpressed but probable desire to forego life sustaining treatment is, in essence, promoting a patient’s right to choose, even when the patient can not do so expressly.116 Belsky wrote in the context of wrongful-life jurisprudence, arguing that parents’ substituted judgments in regards to what their unborn child would choose bolsters support of the inherent notion of wrongful life as a tort.117 But his arguments can also be applied to the debate over intentional diminishment.
Id. at 224; e.g., Superintendent of Belchertown State Sch. v. Saikewicz, 370 N.E.2d 417, 431 (Mass.
1977); In re Quinlan, 355 A.2d 647, 666 (N.J. 1976).
Belsky, supra note 102, at 225 (referring to Quinlan, 355 A.2d 647).
disabled or terminally ill person may have no understanding or awareness of the world.118 Critics of regulation might argue that no such trauma is contemplated by parents who elect to have a child that has Down syndrome or dwarfism and that lives with such conditions would not satisfy the substituted-judgment standard in the right-to-die cases.
Nonetheless, Belsky’s argument is an important counter to the grass-is-greener philosophy of critics of regulation who believe that even a profoundly disabled life is better than no life at all. As Belsky demonstrates, courts have reluctantly been forced to accept that some lives are simply not worth living—that the grass is not always greener on the other side after all.119 There are also slippery-slope arguments that can be made against allowing the use of PGD to select for disabilities. One is that allowing the use of PGD to select for any disabling condition makes it difficult to draw the line at which conditions are too disabling.120 At what point is a differentiation made among conditions that are only mildly disabling, to conditions that are moderately disabling, to conditions that are extremely disabling? If parents can select for hearing loss, can they also select for blindness? If they can select for dwarfism, can they also select for gigantism, a condition that often results in a shorter life span? If parents can select for Down syndrome, can they then select for autism? Who determines which conditions are permissible to select for and which are not? Second, a rationale that supports the use of PGD to select for disability premised on the right of the parent to control the traits and characteristics of the See, e.g., Quinlan, 355 A.2d at 655 (explaining that the patient, Quinlan, existed in a persistent vegetative state and had no awareness of her surroundings).
See Belsky, supra note 102, at 234.
Cf. David King, Preimplantation Genetic Diagnosis and ‘Slippery Slopes,’ BIONEWS, May 13, 2007, 2006 WLNR 9110233 (arguing that the word “serious” in the phrase “serious medical condition” is ambiguous in discussions about PGD).
future child also supports the use of genetic engineering or reproductive cloning for the same purpose—technologies that many may find more frightening in their capabilities.121 Responses to such arguments by opponents of regulation hinge on the procreative liberty interest.122 Opponents of strict regulation argue that just as people have the right not to reproduce because of a child’s genetic characteristics, they have the right to reproduce to have a child with particular characteristics.123 Consequently, because parents who are able to procreate without the use of ART, or PGD in particular, have no duty to obtain genetic information about their children and make reproductive decisions based on that information even if the result is the birth of a disabled child, parents who must use ART and PGD to procreate should not be foreclosed from the ability to gather detailed genetic information about their children to deliberately produce a disabled child.124 A person who procreates naturally knowing that reproduction will produce a disabled child is exercising a right to procreate as much as someone who procreates using PGD to produce a disabled child.125 Opponents of strict regulation also believe that parents are in the best position to judge whether reproduction is in their own best interests and in the best interests of their children.126 These opponents point out that the common presumption is that parents will act in the best interests of their children, and it is presumed precisely because such a presumption is more likely to produce the best results for children than state intervention can provide.127 The fact that such a rule does not always produce the best results for See Alvaré, supra note 65, at 59.
See Robertson, supra note 51, at 447.
children is not reason enough to do away with the presumption.128 The presumption that parents act in the best interests of their children can be applied to instances where parents use PGD to select for disability and is supported by anecdotes like the one above regarding the deaf couple who sought to produce deaf children. They believed that they were acting in the best interests of their children, and the presumption respects that belief even if others disagree.129 It can be pointed out that the presumption assumes that parents know what is in the best interests of their children.130 Generally, this is true of parents who are in the process of raising their children, but does it hold true for parents who are weighing whether or not to bring children into the world based on whether or not they have a disability? Perhaps parents are no more able to weigh the life of chosen disability against no life at all any more effectively than the courts are; though opponents of regulation could argue that if that is the case, then the power to decide should still rest with the people who will raise the child born with the disability and not with the courts or the state.
There are limitations on the freedom of parents to make decisions on behalf of their children even if they believe they are acting in their child’s best interest. Parents cannot choose not to provide medical treatment to a child when it is necessary to preserve the health or life of the child,131 even if they do so because they believe that it is in the child’s best interest for religious reasons or otherwise not to receive such treatment.132
See Robertson, supra note 98, at 470; Prince v. Mass, 321 U.S. 158, 166-67 (1944) (discussing states’ powers versus religious freedoms).
Prince, 321 U.S. at 166.
As Professor Robertson has pointed out, it might then follow that parents “have a moral duty to provide the treatment before birth if post-birth treatments are not feasible and if there is a safe, effective, and minimally intrusive prenatal treatment available” and that such a duty should only be limited by the infringement it makes on the procreative liberty.133 There are also numerous policy arguments both for and against stricter regulation.
Proponents of stricter regulation believe that permitting intentional diminishment and genetic tailoring (both diminishment and enhancement) threatens society as a whole.134 For one, disabled children generally have unique medical and educational needs that may require state assistance.135 Parents may bring disabled children into the world with every intention of providing for them only to find that they cannot meet their child’s special needs because of a change in circumstances. Or they may bring a disabled child into the world knowing the child will need assistance that they will not be able to provide. It does seem possible to distinguish between parents who anticipate bringing a healthy child into the world but give birth to a disabled child instead because they refuse to terminate their pregnancy and parents who bring a disabled child into the world deliberately. In the former case, the parents are merely making a decision to not take an active step necessary to terminate a pregnancy. In the latter, parents must take several active steps, from engaging in IVF to utilizing PGD to select for a disabled child to implanting the genetically defective embryo into the mother’s body.
Robertson, supra note 98, at 470.
Second, permitting parents to select for disability perpetuates the idea that individuals are primarily a product of their genetic heritage.136 In many instances of disability, it is clear that the disability is the direct result of genetic makeup.137 In other instances, such as autism, however, it is not yet clear what role genes play in the expression of the condition.138 The fear is that in an era of such incomplete understanding, permitting parents to select for characteristics perpetuates the idea of “neurogenetic determinism,” the belief that there is a “direct and causal relationship between genetics and behaviour.”139 Belief in such a relationship then perpetuates the idea that because some individuals are more or less products of their DNA, they are more or less responsible for their behavior.140 And while some in society might be less willing to hold individuals responsible for their behavior, others might be willing to discriminate against those based on their genetic makeup or even as a result of the rise in genetic testing that would follow from an increase in selection for disability.141 Another, more expansive, argument is that allowing parents to select either for or against certain genetic traits could circumvent the natural process of evolution.142 By retaining or weeding out certain traits, humans could be altering their genetic heritage with an insufficient understanding of either the short- or long-term consequences.
See Florencio, supra note 38, at 537 (“Some commentators have voiced their concern that society will begin to believe in the existence of a direct and casual relationship between genetics and behavior.”).
See, e.g., Children’s Hospital of the King’s Daughters, Medical Genetics: Down Syndrome (Trisomy 21), http://www.chkd.org/HealthLibrary/content.aspx?pageid=P02121 (last visited Jan. 16, 2009).
Rebecca Muhle et al., The Genetics of Autism, 113 PEDIATRICS 472, 482 (2004) (discussing the complex genetic and behavioral background of autism).
Florencio, supra note 38, at 537 (citation omitted).
Id. at 538 (“Genetic discrimination is one of the most salient dangers associated with genetic testing.”).
Jason C. Roberts, Customizing Conception: A Survey of Preimplantation Genetic Diagnosis and the Resulting Social, Ethical, and Legal Dilemmas, 2002 DUKE L. & TECH. REV. 12, 24 (2002).
However, critics of this argument can reply that humans have been doing this for as long as they have permitted disabled persons to survive long enough to procreate.
Opponents of regulation have policy arguments in their favor as well. One of these is what can be referred to as the “pathologization problem”143 or the idea that certain traits or characteristics that should be recognized as representing a more generous understanding of human diversity are instead labeled as diseases or disabilities. As discussed above, the deaf couple who utilized IVF to conceive two deaf children regard deafness not in the context of a disability, but in the context of culture and diversity.144 To them, the idea of deafness as a disability is a social construction that reflects a value judgment—not a medical judgment—by society.145 In the context of the use of PGD to select against disability, their greatest fear is that such a use stigmatizes the deaf community, devalues the lives of the deaf, reinforces the disability label, and limits the choices of those who are members of the deaf community.146 The same logic holds true for preventing deaf couples, or those with disabilities in general, from utilizing PGD to perpetuate the condition that others regard as a disability but they regard as normal;
preventing them from producing children with their condition stigmatizes their community. It follows that the reverse—allowing them to utilize PGD to produce children with their disability—allows them to perpetuate their community and attack the stigmatization of their condition. However, this view is not held by all of those who are disabled,147 and an argument can be made that the lives of those who are disabled can be Groman, supra note 48, at 2770.
See supra Part I.A. and note 15 and accompanying text.
Groman, supra note 48, at 2783.
respected at the same time that ART or genetic technologies are used to prevent or circumvent disability.