Antidiscrimination Law Archives - Columbia Law Review

I will never forget the day my mother found out she was the source of my HLA-B27 positivity and told me: “I am sorry.” It was several years after my diagnosis with a chronic illness that has and would cause me suffering. My mother was made to feel that by having a disabled child, she did something wrong. This Note is about the systems that instilled in my mother the need to say sorry . [footnote]This use of first person is a deliberate choice by the author to foreground narratives about disability identity and interpret the law through a disabled person’s lens. Disability theorists have highlighted the importance of disability narratives in illuminating the constitutive outside and “inserting persons into the social world.” See Tobin Siebers, Disability as Masquerade, 23 Literature & Med. 1, 8 (2004) (“Narratives about disability identity . . . are political because they offer a basis for identity politics, allowing people with different disabilities to tell a story about their common cause.”).[/footnote] It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. - Oliver Wendell Holmes, Buck v. Bell .[footnote]274 U.S. 200, 207 (1927).[/footnote] Introduction Developments in reproductive technology are introducing new possibilities for reproductive health, genetic testing, and disease eradication. Simultaneously, legislators and the judiciary have decreased autonomy in reproductive choices. This pernicious combination presents challenges for many women[footnote]This Note generally favors the use of “women” over “pregnant people” despite acknowledging the mosaic of identities associated with pregnancy. “Unsexing pregnancy” using gender-inclusive terminology and the recognition of pregnancy discrimination’s unique effect on the LGBTQ community is an ontological project that expands perceived possibilities for transgender men and nonbinary people. See Jessica Clarke, Pregnant People?, 119 Colum. L. Rev. Forum 173, 173–76 (2019), https://columbialawreview.org/wp-content/uploads/2019/10/Clarke-Pregnant_People-1.pdf [https://perma.cc/GQS3-UJQ3] (“The law could see pregnancy not only as something that happens to women’s bodies, but also as a bodily condition experienced by people who do not identify as women.”). This Note nonetheless retains some reference to “women” in part because transgender people may qualify for ADA coverage under the theory that a “gender dysphoria diagnosis” enables transgender plaintiffs to invoke the ADA’s protections. See Namrata Verghese, The Promise of Disability Rights Protections for Trans Prisoners, 21 Dukeminier Awards J. 291, 293 (2022). In June 2023, the Supreme Court denied a petition for certiorari in Kincaid v. Williams, 143 S. Ct. 2414 (2023), after a Fourth Circuit panel ruled the ADA does not exclude coverage for people who are “transgender” or have “gender dysphoria.” See Williams v. Kincaid, 45 F.4th 759, 773 (4th Cir. 2022); Arthur S. Leonard, Supreme Court Declines to Review 4th Circuit Ruling that Gender Dysphoria Is a “Disability” Under the Americans With Disabilities Act, LGBT L. Notes, July 2023, at 6, 6.[/footnote] seeking reproductive care and protection from federal antidiscrimination laws when healthcare providers make decisions based on unsubstantiated and even intolerant preconceptions about the quality of disabled life. Parallel to other civil rights statutes, the Americans with Disabilities Act (ADA) covers people , and primarily people with disabilities. Under Title III of the ADA, “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.”[footnote]ADA Amendments Act (ADAAA) of 2008, 42 U.S.C. § 12182(a) (2018).[/footnote] The 2008 Amendments (ADAAA) clarified that disability definitions should be construed broadly, favoring coverage to the maximum extent possible under the terms of the ADA.[footnote]Section 2(b) of the ADAAA states that it was enacted “to carry out the ADA’s objectives of providing ‘a clear and comprehensive national mandate for the elimination of discrimination’ and ‘clear, strong, consistent, enforceable standards addressing discrimination’ by reinstating a broad scope of protection to be available under the ADA.” ADA Amendments Act (ADAAA) of 2008, Pub. L. No. 110-325, § 2(b)(1), 122 Stat. 3553, 3553 (quoting 42 U.S.C. § 12101(b)) (codified in scattered sections of Title 42 of the U.S.C.).[/footnote] Yet the ADA has not been interpreted to afford broad coverage to those with unexpressed genetic indicators for disability.[footnote]This Note sometimes refers to individuals with genetic conditions as “genetic carriers” or individuals with “unexpressed genetic indicators for disability,” as here. These terms are used interchangeably to describe individuals likely to pass on certain genomic variants associated with an impairment in reproduction, but who do not show symptoms of the impairment themselves. Research compiling data of carrier screening across numerous healthcare practices found approximately twenty-four percent of individuals were carriers for at least one of 108 disorders. Gabriel A. Lazarin et al., An Empirical Estimate of Carrier Frequencies for 400+ Causal Mendelian Variants: Results From an Ethnically Diverse Clinical Sample of 23,453 Individuals, 15 Genetics Med. 178, 179 (2013).[/footnote] The ADA and its Amendments provide little recourse, then, for women with genetic indicators for disease who are denied assisted reproductive technology (ART) services on that basis. Fertility clinics have the discretion to refuse these women equal access to healthcare services based on disability-related animus, and the law provides no remedy. In fact, the United States’ weak regulatory framework on ART[footnote]See infra section I.A.[/footnote] and the American Society for Reproductive Medicine’s (ASRM) recommendation that physicians consider “the well-being of offspring” in determining whether to deny services[footnote]Ethics Comm. of the Am. Soc. for Reprod. Med., Child-Rearing Ability and the Provision of Fertility Services, 100 Fertil. Steril. 864, 865 (2009), https://www.fertstert.org/article/S0015-0282(09)02474-1/pdf [https://perma.cc/4HH3-NR77] [hereinafter ASRM Ethics Committee, Child-Rearing Ability].[/footnote] encourages such preconceptions to drive reproductive healthcare. At present, antidiscrimination law affords few protections for individuals with genetic conditions,[footnote]See infra section I.B.[/footnote] just as technology renders genetic conditions easier to detect and weed out.[footnote]See infra notes 146–148 and accompanying text.[/footnote] Published studies and reporting mechanisms documenting fertility clinic practitioner refusals to transfer embryos are lacking.[footnote]See Judith Daar, A Clash at the Petri Dish: Transferring Embryos With Known Genetic Anomalies, 5 J.L. & Bioscis. 219, 246 (2018) [hereinafter Daar, A Clash at the Petri Dish] (“The absence of published studies or other formal reporting on the frequency and motivation for physician refusals to transfer embryos on the basis of anticipated offspring health poses challenges to an empirical analysis of this clinical scenario, but sufficient anecdotal and ancillary data exist to permit a reasonable discussion.”).[/footnote] Nonetheless, fertility clinic policies and patient anecdotes confirm the regularity of the practice.[footnote]See, e.g., Iris G. Insogna & Elizabeth Ginsburg, Transferring Embryos With Indeterminate PGD Results: The Ethical Implications, 2 Fertility Rsch. & Prac. Feb. 1, 2016, at 1, 2 (describing the case of a woman seeking the transfer of an embryo with BRCA-1 mutation and the clinic denied implantation).[/footnote] Popular media has amplified anecdotes of disabled people seeking in-vitro fertilization (IVF) to intentionally select for disabled embryos, such as a deaf lesbian couple seeking a deaf sperm donor.[footnote]See, e.g., Richard Gray, Couples Could Win Right to Select Deaf Baby, The Telegraph (Apr. 13, 2008), http://www.telegraph.co.uk/news/uknews/1584948/Couples-could-win-right-to-select-deaf-baby.html (on file with the Columbia Law Review ); Liza Mundy, A World of Their Own, Wash. Post (Mar. 31, 2002), https://www.washingtonpost.com/archive/lifestyle/magazine/2002/03/31/a-world-of-their-own/abba2bbf-af01-4b55-912c-85aa46e98c6b/ (on file with the Columbia Law Review ) (recounting the story of a couple that sought out a deaf sperm donor); Darshak M. Sanghavi, Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, N.Y. Times (Dec. 5, 2006), https://www.nytimes.com/2006/12/05/health/05essa.html (on file with the Columbia Law Review ); see also Sarah Aviles, Note, Do You Hear What I Hear?: The Right of Prospective Parents to Use PGD to Intentionally Implant an Embryo Containing the Gene for Deafness, 19 Wm. & Mary J. Women & L. 137, 139 (2012) (comparing the lack of media attention when preimplantation genetic diagnosis (PGD) is used to screen out disabilities compared to the “public outcry” associated with designing babies with certain characteristics).[/footnote] In general, fertility clinic physicians have refused these types of requests, with one Maryland-based physician telling the New York Times , “In general, one of the prime dictates of parenting is to make a better world for our children . . . . Dwarfism and deafness are not the norm.”[footnote]Sanghavi, supra note 13 (internal quotation marks omitted) (quoting Dr. Robert J. Stillman). Another physician interviewed from the Chicago area echoed the sentiment, stating, “If we make a diagnostic tool, the purpose is to avoid disease.” Id. (internal quotation marks omitted) (quoting Dr. Yury Verlinsky).[/footnote] In one infamous case, a deaf lesbian couple from Maryland employed sperm from a deaf male friend because they sought a deaf baby,[footnote]See Mundy, supra note 13. There is no national regulation prohibiting selection for traits like deafness. In the United Kingdom, on the other hand, the 2008 Human Fertilisation and Embryology Act prohibited the selection and implantation of embryos known to have a genetic abnormality resulting in the birth of a child with a “serious physical or mental disability” or a “serious illness.” Human Fertilisation and Embryology Act 1990 § 14(4)(9) (UK); see also Gerard Porter & Malcolm K. Smith, Preventing the Selection of “Deaf Embryos” Under the Human Fertilisation and Embryology Act 2008: Problematizing Disability?, 32 New Genetics & Soc’y 171, 173 (2013) (scrutinizing the legislative review process prior to the Act’s passage).[/footnote] and conservative commentators decried the act as creating “victims from birth.”[footnote]Wendy McElroy, Victims From Birth: Engineering Defects in Helpless Children Crosses the Line, Fox News (Jan. 13, 2015), https://www.foxnews.com/story/victims-from-birth-engineering-defects-in-helpless-children-crosses-the-line [https://perma.cc/FJP3-3U9H].[/footnote] Some couples, on the other hand, use genetic testing to determine whether their embryos carry genes for certain impairments—even with the initial aim of selecting against disability[footnote]For examples of individuals with disabilities using IVF to select against a trait leading to a disability, see Sonja Sharp, How Modern Medicine Neglects Mothers-to-Be With Disabilities, L.A. Times (Nov. 17, 2021), https://www.disabilityscoop.com/2021/11/17/how-modern-medicine-neglects-mothers-to-be-with-disabilities/29600/ (on file with the Columbia Law Review ) (“Even Flores, who decided to screen out embryos with her condition when she and her husband began IVF, bristled at the implication that she should have to, or that she was selfish for wanting an experience that close to 90% of American women will have in their lifetimes.”). For a reproductive medicine case study involving individuals who were unknowing carriers of a genetic disorder nevertheless seeking implantation of genetically affected embryos, see Sigal Klipstein, Transfer of Embryos Affected by Genetic Disease, in Case Studies in the Ethics of Assisted Reproduction 37, 37–42 (Louise P. King & Isabelle C. Band eds., 2023).[/footnote]—but seek implantation of some genetically anomalous embryos notwithstanding the test’s results. Selecting for traits raises numerous ethical questions;[footnote]See, e.g., Rosamund Scott, Choosing Between Possible Lives: Legal and Ethical Issues in Preimplantation Genetic Diagnosis, 26 Oxford J. Legal Stud. 153, 161 (2000) (exploring implications for the widespread use of PGD without serious justifications); Rachel E. Remaley, Note, “The Original Sexist Sin”: Regulating Preconception Sex Selection Technology, 10 Health Matrix: J.L.–Med. 249, 250–51 (2000) (reviewing the “unique legal and ethical dilemmas” associated with sex selection); Karen E. Schiavone, Comment, Playing the Odds or Playing God? Limiting Parental Ability to Create Disabled Children Through Preimplantation Genetic Diagnosis, 73 Alb. L. Rev. 283, 294–302 (2009) (considering moral arguments that weigh a parent’s autonomy to create disabled life against a child’s future autonomy); Lindsey A. Vacco, Comment, Preimplantation Genetic Diagnosis: From Preventing Genetic Disease to Customizing Children. Can the Technology Be Regulated Based on the Parents’ Intent?, 49 St. Louis L.J. 1181, 1218–20 (2005) (explaining how the value of procreative liberty has led to a lack of regulation on ART); see also infra notes 144, 148. A body of scholarship on “intentional diminishment” considers the ethical permissibility and potential liability of parents’ selection of disabled children. See, e.g., Taylor Irene Dudley, Comment, A Fair Hearing for Children, 9 Whittier J. Child & Fam. Advoc. 341, 343 (2010) (contending intentional selection of a child with deafness is a form of child abuse).[/footnote] at present, the arbiters of these ethical debates are clinics[footnote]Some clinics use ethics committees to respond to complicated ethical questions that arise in embryology. In 1992, the Joint Commission on Accreditation of Healthcare Organizations mandated that hospitals have a mechanism for resolving ethical questions, recommending a multidisciplinary ethics committee. Anne-Marie Slowther & Tony Hope, Clinical Ethics Committees, 321 Brit. Med. J. 649, 649–50 (2000) (referencing the 1992 Accreditation Manual for Hospitals). Nonetheless, a 2009 analysis estimated 73.5% of U.S. clinics are not university or hospital affiliated, meaning they may not have ethics committees. Robert Klitzman, Beata Zolovska, William Folberth, Mark V. Sauer, Wendy Chung & Paul Appelbaum, Preimplantation Genetic Diagnosis on In-Vitro Fertilization Websites: Presentations of Risks, Benefits and Other Information, 92 Fertility & Sterility 1276, 1281 (2009).[/footnote] rather than the individuals producing these embryos. Policies prohibiting implantation of genetically anomalous embryos not only screen out prospective parents seeking disabled children but also refuse service to those for whom selection of viable genetically anomalous embryos represents their only opportunity at biological parenthood.[footnote]Transferring Embryos With Genetic Anomalies Detected in Preimplantation Testing: An Ethics Committee Opinion, 107 Am. Soc’y for Reprod. Med. 1130, 1131 (2017) [hereinafter ASRM Ethics Committee, Transferring Embryos With Genetic Anomalies] (“[R]equests may be the result of prospective parents actively seeking to birth a child with a condition that one or both of the intended parents express, or it may be that all the viable embryos produced are genetically anomalous and thus represent the patient’s only opportunity for biologic parenthood.”).[/footnote] Women predisposed to having disabled children face compounded constraints on reproductive autonomy. A woman who is an asymptomatic genetic carrier for Duchenne Muscular Dystrophy (DMD) can be denied services by a fertility clinic because any son she conceives has a fifty percent chance of developing DMD.[footnote]See infra section II.B.1 (“Cam”).[/footnote] A mother to two deaf sons can be denied reproductive care after her embryos test positive for a gene associated with hearing impairment.[footnote]See infra section II.B.2 (“Lia”).[/footnote] An aspiring mother who can only afford one round of IVF can be denied the implantation of any of her embryos because they carry a genetic indicator for autoimmune diseases.[footnote]See infra section II.B.3 (“Judy”).[/footnote] While federal law prohibits genetic discrimination in employment and health insurance,[footnote]See infra section I.C (describing the Genetic Information Nondiscrimination Act (GINA)).[/footnote] and disallows service denials based on disability,[footnote]See infra section I.B (outlining the ADA’s multiple theories of coverage).[/footnote] fertility clinics’ refusals to provide reproductive services on the basis of genetic conditions go largely unchecked. In many cases, women are not presently disabled enough to qualify for the ADA’s protections, but nevertheless become victims of discrimination in reproductive services based on stereotypes about disabled people. Permitting this gap in antidiscrimination law to persist legitimizes the devaluation of disabled lives, prevents some women with genetic conditions from becoming mothers, and kindles the fire igniting current debates surrounding fetal personhood legislation.[footnote]Without addressing the regulatory gap that enables healthcare professionals to discriminate based on antidisability animus in a way that maximizes, rather than further contracts, women’s autonomy, abortion opponents may deploy personhood laws to do the same. See infra section I.A.2 (reviewing the rise of fetal personhood laws in the United States). Some predict the battleground over reproductive rights will turn to state limitations on women’s autonomy in using in-vitro fertilization and preimplantation genetic diagnosis. See Christian J. Sorensen, Thinking Outside the Box: Preimplantation Genetic Diagnosis, In Vitro Fertilization, and Disability Screening in the Wake of Box v. Planned Parenthood , 31 Wm. & Mary Bill Rts. J. 149, 152 (2022) (concluding “the next logical step for states concerned with parents committing reproductive discrimination in the wake of advancements in genetic screening is to target PGD and IVF, just as they have targeted trait selection in the abortion context”); see also Judith Daar, Emerging Reproductive Technologies: Regulating Into the Void, in Case Studies in the Ethics of Assisted Reproduction, supra note 17, at 13, 19–20 (“Routine aspect[s] of IVF, including preimplantation genetic testing and embryo cryopreservation may be subject to restriction in a post- Roe world as the balance of state interests shifts from protecting patient choice and autonomy to favoring unborn human life over any other interests.”).[/footnote] This Note highlights the risks of allowing unchecked fertility clinic discretion in assisted reproductive technology to persist and proposes several possible solutions that bridge antidiscrimination principles and women’s autonomy.

Antidiscrimination Law

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