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Reason-Based Abortion Bans, Disability Rights, and the Future of Prenatal Genetic Testing

Published online by Cambridge University Press:  30 January 2023

Nina Roesner ,
Leila Jamal ,
David Wasserman  and
Benjamin E. Berkman
Nina Roesner
Affiliation:
Department of Bioethics, National Institute of Health, Bethesda, MD, USA
Leila Jamal
Affiliation:
Division of Intramural Research, Centralized Sequencing Initiative, National Institute of Allergy and Infectious Diseases, National Institute of Health, Bethesda, MD, USA
David Wasserman
Affiliation:
Department of Bioethics, National Institute of Health, Bethesda, MD, USA
Benjamin E. Berkman*
Affiliation:
Department of Bioethics and National Human Genome Research Institute (NHGRI), National Institute of Health, Bethesda, MD, USA
*
*Corresponding author. Email: berkmanbe@mail.nih.gov
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Extract

Recent advances in prenatal genetic testing have made testing for congenital disorders more accessible, with emerging technologies promising further expansion of available testing options. In particular, non-invasive prenatal testing (“NIPT”) has allowed women to identify more fetal disorders earlier in pregnancy than was possible only a decade ago. In addition to allowing women to prepare for the birth of a child with a disability, prenatal diagnoses give women the ability to terminate a pregnancy to avoid raising a child with a disability, a choice driven by myriad factors.

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Articles
Information
American Journal of Law & Medicine , Volume 48 , Issue 2-3 , July 2022 , pp. 187 - 199
Copyright
© 2023 The Author(s)

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References

1 The terms “disability” and “genetic abnormality” are not well defined in the context of GSABs and are often used interchangeably. For the purposes of this paper, they will be used to refer to congenital conditions generally rather than a subset of medically or ethically defined conditions.

2 See Evolution of Prenatal Testing, The Hastings Ctr. (Nov. 27, 2017), https://www.thehastingscenter.org/prenatal/evolution-prenatal-testing/ [https://perma.cc/U85S-AXBQ]; Nevena Krstić & Sarah G. Običan, Current Landscape of Prenatal Genetic Screening and Testing, 112 Birth Defects Rsch 321, 321-322 (2019).

3 See Evolution of Prenatal Testing, supra note 2; Krstić & Običan, supra note 2.

4 Am. Coll. Obstetricians & Gynecologists, Invasive Prenatal Testing for Aneuploidy, 88 ACOG Prac. Bull. 1 (2007).

5 See Evolution of Prenatal Testing, supra note 2.

6 See Am. Coll. Obstetricians & Gynecologists, Screening for Fetal Chromosomal Abnormalities, 226 ACOG Prac. Bull. (2016); Errol R. Norwitz & Brynn Levy, Noninvasive Prenatal Testing: The Future is Now, 6 Rev. Obstetrics & Gynecology 48 (2013).

7 See Evolution of Prenatal Testing, supra note 2; Michelle J. Bayefsky & Benjamin E. Berkman, Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information, Am. J. Bioethics (forthcoming 2022); Krstić & Običan, supra note 2, at 324-325.

8 See Evolution of Prenatal Testing, supra note 2; Bayefsky & Berkman, supra note 7.

9 Bayefsky & Berkman, supra note 7.

10 Persistent inequality in access to reproductive care, including NIPT, is important in the discussion of abortion policy but is beyond the scope of this paper. Anthony R. Gregg et al., Noninvasive Prenatal Screening for Fetal Aneuploidy, 2016 Update: A Position Statement of the American College of Medical Genetics and Genomics, 18 Genetics Med. 1056 (2016); Am. Coll. Obstetricians & Gynecologists, Prenatal Diagnostic Testing for Genetic Disorders, 162 ACOG Prac. Bull. (2016).

11 720 Ill. Comp. Stat. 510/1(2016); 1989 Pa. Laws 64.

12 Greer Donley, Does the Constitution Protect Abortions Based on Fetal Anomaly?: Examining the Potential for Disability-Selective Abortion Bans in the Age of Prenatal Whole Genome Sequencing, 20 Mich. J. of Gender & L. 291, 303 (2013).

13 See Missouri Introduces Americans United for Life Model Legislation to Prohibit Sex-Selection Abortions and the Targeting of the Disabled, Am. United for Life (Jan. 31, 2013), https://aul.org/2013/01/31/missouri-introduces-americans-united-for-life-model-legislation-to-prohibit-sex-selection-abortions-and-the-targeting-of-the-disabled/; North Dakota Becomes First State to Limit Abortions Based on Sex-Selection and Genetic Abnormalities Using AUL Model Legislation, Am. United for Life (Mar. 26, 2013), https://aul.org/2013/03/26/north-dakota-becomes-first-state-to-limit-abortions-based-on-sex-selection-and-genetic-abnormalities-using-aul-model-legislation/ [https://perma.cc/K7RU-7Q6K].

14 See, e.g., S.B. 468, 93rd Gen. Assemb., Reg. Sess. (Ark. 2021); H.R. 1221, 2021 Leg., Reg. Sess. (Fla. 2021); H.R. 2281, 101st Gen. Assemb., Reg. Sess. (Ill. 2019); H.R. 1815, 98th Gen. Assemb., 2d Reg. Sess. (Mo. 2016); H.R. 1678-FN, 2020 Leg., 2020 Sess. (N.H. 2019); S.B. 1430, 56th Leg., 2d Sess. (Okla. 2018); S.B. 74, 2021 Leg., Reg. Sess. (W. Va. 2021); H.R. 0161, 2021 Leg., Gen. Sess. (Wyo. 2021).

15 2021 Ariz. Sess. Laws 286; 2016 Ind. Acts 313; 2019 Ky. Acts 37; 2016 La. Acts 563; 2020 Miss. Laws 1295; 2013 N.D. Laws 117. Many states have passed similar legislation specifically banning Down syndrome-selective abortions, but those laws have been excluded from this analysis.

E.g., 2021 S.D. Sess. Laws Ch. 151; 2019 Utah Laws 124.

16 H.R. 4737, 2021 Leg., Reg. Sess. (Mich. 2021); S. 760, 2021 Leg., Reg. Sess. (Mich. 2021); H.R. 3872, 124th Gen. Assemb., 124th Sess. (S.C. 2021); Assemb. 595, 2021-2022 Leg., Gen. Sess. (Wis. 2021).

17 2013 N.D. Laws 117.

18 Id.

19 Id.

20 2016 Ind. Acts 313; 2016 La. Acts 563; 2013 N.D. Laws 117.

21 2021 Ariz. Sess. Laws 286; 2020 Miss. Laws 1295.

22 2021 Ariz. Sess. Laws 286; 2016 Ind. Acts 313; 2019 Ky. Acts 37; 2016 La. Acts 563.

23 2021 Ariz. Sess. Laws 286 (Arizona extends liability to those who coerce or finances GSAs).

24 See, e.g., 2019 Ky. Acts 37; 2016 La. Acts 563.

25 2021 Ariz. Sess. Laws 286; 2016 La. Acts 563.

26 See, e.g., 2020 Miss. Laws 1295 (provider must document whether “the presence or presumed presence of any genetic abnormality in the unborn human being had been detected at the time of the abortion” and provide a “statement confirming that the reason for the abortion, as stated by the maternal patient, was not because of… the presence or presumed presence of any genetic abnormality”).

27 2021 Ariz. Sess. Laws 286.

28 E.g., Relating to the Prohibition on Abortions for Sex Selection or Genetic Abnormalities: Hearing on H.B. 1305 Before the S. Judiciary Comm, 63rd Leg. Assemb., Gen. Sess. (N.D. 2013) (statement of Rep. Betty Grande) (the bill “affirms a policy of nondiscrimination” by extending existing protections for those with disabilities to “such persons before they are born.”).

29 Brief of the States of Wis. et al. as Amici Curiae Supporting Petitioners at 18, Box v. Planned Parenthood of Ind. & Ky., Inc., 139 U.S. 1780 (2019) (No. 18-483) [hereinafter States’ Brief]; Civil Rights Act of 1964, Pub. L. No. 88-352, 78 Stat. 241, 243; Americans with Disabilities Act of 1990, Pub. L. 101-336, 104 Stat. 327, 355.

30 2019 Ky. Acts 37; Americans with Disabilities Act, supra note 28, at 331-32; Ky. Rev. Stat. Ann. §§ 344.010 - 344.990.

31 E.g., 2020 Miss. Laws 434 (legislative findings referencing the “inherent right against discrimination”); Relating to the Prohibition on Abortions for Sex Selection or Genetic Abnormalities, Definitions and Provide a Penalty: Hearing on H.B. 1305 Before the H. Human Servs. Comm, 63rd Leg. Assemb., Gen. Sess. (N.D. 2013) (statement of Janne Myrdal, State Director, Concerned Women of America) (“Our Founding Fathers clearly delineated the right to life as one that is unalienable and endowed by our Creator” that is violated by GSAs).

32 H.R. Floor Session Feb. 8, 2013, 63rd Legis. Assemb., (N.D. 2013) 11th order (statement of Rep. Vernon Laning).

33 S.B. 1457, 55th Leg. 286th Sess. (Ariz. 2021).

34 Petition for Writ of Certiorari at 23, Comm’r of the Ind. State Dep’t of Health v. Planned Parenthood of Ind. & Ky., Inc., 139 U.S. 1780 (2019) (No. 18-483) [hereinafter Petition for Certiorari].

35 States’ Brief, supra note 28, at 19; Eugenics and Scientific Racism, Nat’l Hum. Genome Rsch. Inst., https://www.genome.gov/about-genomics/fact-sheets/Eugenics-and-Scientific-Racism [https://perma.cc/9EGG-EES9] (Dec. 1, 2021).

36 States’ Brief, supra note 28, at 24.

37 Some states include exceptions for lethal fetal anomalies. See 2021 Ariz. Sess. Laws 286; 2016 Ind. Acts 213; 2019 Ky. Acts 37; 2016 La. Acts 563.

38 See, e.g., Respondents’ Brief in Opposition to Petition for Writ of Certiorari, at 13-17, Box v. Planned Parenthood of Ind. & Ky., Inc., 139 U.S. 1780 (2019) (No. 18-483), 2020 WL 1313289, at *14.

39 Petition for Certiorari, supra note 33, at 29.

40 See, e.g., Miss. Code Ann. 41-41-403 (West 2020) (“Mississippi maintains a compelling interest in preventing abortion from becoming a tool of modern-day eugenics”).

41 Relating to the Prohibition on Abortions for Sex Selection or Genetic Abnormalities: Hearing on H.B. 1305 Before the S. Judiciary Comm, 63rd Leg. Assemb., Gen. Sess. (N.D. 2013) (statement of William Schuh).

42 Secretary Meier’s Response to Plaintiffs’ Motion for a Temporary Restraining Order of House Bill 5 at 6, EMW Women’s Surgical Ctr., P.S.C. v. Beshear, No. 3:19-cv-00178-DJH (W.D. Ky. Mar. 19, 2019) [hereinafter Meier’s Response].

43 See, e.g., Am. United for Life, Prenatal Nondiscrimination Act of 2018, S. 2325, 115th Cong. (2018).

44 Relating to the Prohibition on Abortions for Sex Selection or Genetic Abnormalities: Hearing on H.B. 1305 Before the S. Judiciary Comm, 63rd Leg. Assemb., Gen. Sess. 2 (N.D. 2013) (statement of William Schuh).

45 Meier’s Response, supra note 41, at 8-9.

46 2021 Ariz. Sess. Laws 286.

47 See Kenneth W. Simons, Hate (or Bias) Crime Laws, in The Palgrave Handbook of Applied Ethics and the Criminal Law 285, 285-286 (Larry Alexander & Kimberly Kessler Ferzan eds., 2019).

48 See id. at 294.

49 See Melissa Murray, Race-ing Roe: Reproductive Justice, Racial Justice, and the Battle for Roe v. Wade, 134 Harv. L. Rev. 2025 (2021); Dov Fox, Abortion, Eugenics and Personhood in the Supreme Court (Univ. San Diego Sch. L. L. Rsch Paper Series, Research Paper No. 19-405, 2019).

50 See Rosemarie Garland-Thomson, The Case for Conserving Disability, 9 J. Bioethical Inquiry 339 (2012).

51 See, e.g., 2020 Miss. Laws 434 (finding that “[p]harmaceutical treatments, gene therapies, and prosthetic advances have given formerly handicapped and disabled human beings much greater opportunities for survival and success than ever before.”).

52 See, e.g., States’ Brief, supra note 28, at 25.

53 Nikita Mhatre, Access, Autonomy, and Dignity: Abortion Care for People with Disabilities (2021).

54 See Murray, supra note 48.

55 In the process of in vitro fertilization, preimplantation screening allows prospective parents to test embryos for certain genetic conditions prior to choosing which embryos will be transferred to a woman’s uterus for gestation. See Susannah Baruch et al., Preimplantation Genetic Screening: A Survey of in vitro Fertilization Clinics, 10 Genetics Med. 685 (2008).

56 See Bayefsky & Berkman, supra note 7, at 8.

57 See Sujatha Jesudason & Julia Epstein, The Paradox of Disability in Abortion Debates: Bringing the Pro-Choice and Disability Rights Communities Together, 84 Contraception 541, 542 (2011).

58 See Nat’l Hum. Genome Rsch. Inst., Understanding What Can Be Diagnosed by Which Genetic Test, YouTube (Sep. 8, 2015), https://youtu.be/N6zuLj7VvpY.

59 E.g., Americans with Disabilities Act, supra note 28, at 329-330 (“The term ‘disability’ means, with respect to an individual ––– (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment.”)

60 Gratias Tom Mundakel, Down Syndrome, Medscape (May 18 2020), https://emedicine.medscape.com/article/943216-overview#a4 [https://perma.cc/X3AN-P82F]

61 See, e.g., Petition for Certiorari, supra note 33, at 29; Jaime Staples King, Not This Child: Constitutional Questions in Regulating Noninvasive Prenatal Genetic Diagnosis and Selective Abortion, 60 UCLA L. Rev. 2, 43 (2012).

62 See Sital Kalantry, What Are the Right Reasons for Terminating a Pregnancy?, Hum. Rts. Home Blog (Mar. 15, 2018), https://lawprofessors.typepad.com/human_rights/2018/03/what-are-the-right-reasons-for-terminating-a-pregnancy.html [https://perma.cc/MUC4-Q64H].

63 Mark S. DeFrancesco, ACOG Statement on Abortion Reason Bans, Am. Coll. Obstetricians & Gynecologists (Mar. 10, 2016), https://www.acog.org/news/news-releases/2016/03/acog-statement-on-abortion-reason-bans [https://perma.cc/J249-B494].

64 See Brief of Amici Curiae, Disability Advocates in Support of Plaintiffs-Appellees and Affirmance at 16-17, Planned Parenthood of Ind. & Ky., Inc. v. Comm’r of the Ind. State Dep’t of Health, 917 F.3d 532 (2018) (No. 17-3163) [hereinafter Disability Advocates Brief]; King, supra note 59, at 37.

65 See Disability Advocates Brief, supra note 62, at 16; King, supra note 59, at 37.

66 See Disability Advocates Brief, supra note 62, at 16; King, supra note 59, at 36.

67 See Disability Advocates Brief, supra note 62, at 16; King, supra note 59, at 36; Philippa Willitts, As a Disabled Woman, I Oppose Ohio’s Down Syndrome Abortion Law. This is Why., Glob. Comment (Jan. 5, 2018) https://globalcomment.com/disabled-woman-oppose-ohios-syndrome-abortion-law/ [https://perma.cc/EM5E-ZTZP].

68 See Jacqueline J.P.M. Pieters et al., Considering Factors Affecting the Parental Decision to Abort After a Prenatal Diagnosis of a Sex Chromosome Abnormality, 14 Genetics Med. 558, 558 (2012); Kwon Chan Jeon et al., Decision to Abort After a Prenatal Diagnosis of Sex Chromosome Abnormality: A Systematic Review of the Literature, 14 Genetics Med. 27, 36-37 (2011); Anne Hawkins et al., Variables Influencing Pregnancy Termination Following Prenatal Diagnosis of Fetal Chromosome Abnormalities, 22 J. Genetic Counseling 238, 245 (2013).

69 Disability Advocates Brief, supra note 62, at 5; see also David Perry, Don’t Politicize My Son Over Down Syndrome, CNN: Opinion (Aug. 24, 2015), https://www.cnn.com/2015/08/24/opinions/perry-abortion-down-syndrome-ohio/index.html [https://perma.cc/GN8E-35FM].

70 See Madelyn Peterson, Disability Advocacy and Reproductive Choice: Engaging with the Expressivist Objection, 21 J. Genetic Counseling 13, 14 (2012).

71 See id.; Bayefsky & Berkman, supra note 7, at 8.

72 See Bruce P. Blackshaw, Genetic Selective Abortion: Still a Matter of Choice, 23 Ethical Theory & Moral Prac. 445, 450 (2020); Peterson, supra note 68 at 15.

73 See Adriana Kater-Kuipers et al., Ethics of Routing: A Critical Analysis of the Concept of ‘Routinisation’ in Prenatal Screening, 44 J. Med. Ethics 626, 627 (2018); Simona Zaami et al., Ethical, Legal and Social Issues (ELSI) Associated with Non-Invasive Prenatal Testing: Reflections on the Evolution of Prenatal Diagnosis and Procreative Choices, 12 Genes 204, 207-208 (2021).

74 See Kater-Kuipers et al., supra note 71, at 627; Zaami et al., supra note 71, at 208; Paul Steven Miller & Rebecca Leah Levine, Avoiding Genetic Genocide: Understanding Good Intentions and Eugenics in the Complex Dialogue Between the Medical and Disability Communities, 15 Genetics Med. 95, 102 (2013).

75 See Zaami et al., supra note 73, at 208.

76 Certified genetic counselors are healthcare professionals who provide information and guidance about testing, diagnosis, and risk of genetic conditions. See, e.g., About Genetic Counselors, Nat’l Soc’y Genetic Couns, https://www.nsgc.org/About/About-Genetic-Counselors [https://perma.cc/F6P4-WW3U].

77 See Anne C. Madeo et al., The Relationship Between the Genetic Counseling Profession and the Disability Community: A Commentary, 155 Am. J. Med. Genetics 1777, 1778 (2011); Miller & Levine, supra note 72, at 97.

78 See, e.g., Emma Vaimberg et al., Project Inclusive Genetics: Exploring the Impact of Patient-Centered Counseling Training on Physical Disability Bias in the Prenatal Setting, 16 PLoS One 1 (2021); Ellyn Farrelly et al., Genetic Counseling for Prenatal Testing: Where is the Discussion About Disability?, 21 J. Genetic Counseling 814, 820-21 (2012).

79 Nat’l Soc’y Genetic Couns., Position Statement on Disability (Apr. 12, 2018), https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/disability [https://perma.cc/8WPR-2557].

80 Anthony Wynshaw-Boris, American Society of Human Genetics Statement Regarding Concepts of “Good Genes” and Human Genetics, Am. Soc’y Hum. Genetics (Sep. 24, 2020), https://www.ashg.org/publications-news/ashg-news/statement-regarding-good-genes-human-genetics/ [https://perma.cc/G8CH-3JT6].

81 Miller & Levine, supra note 72, at 97-98; see also Madeo et al., supra note 75, at 1778.

82 See Madeo et al., supra note 75, at 1779; Farrelly et al., supra note 76, at 820.

83 See Farrelly et al., supra note 76, at 820.

84 Id. at 819-20; Vaimberg et al., supra note 76, at 6.

85 See Madeo et al., supra note 75, at 1780; Perry, supra note 67.

86 E.g., Madeo et al., supra note 75; Jesudason & Epstein, supra note 55; Kalantry, supra note 60; Ruth Macklin, Judicial, Legislative, and Professional Attempts to Restrict Pregnant Women’s Autonomy, 16 AMA J. Ethics 827 (2014).

87 See, e.g., Kalantry, supra note 60; Macklin, supra note 84; King, supra note 59.

88 Arc of Ind., Statement on House Bill 1337 (Mar. 10, 2016); see also David Perry & Elizabeth Picciuto, Op-Ed: Disability Rights and Reproductive Rights Don’t Have to be in Conflict, L.A. Times (Aug. 29, 2016), https://www.latimes.com/opinion/op-ed/la-oe-perry-picciuto-disability-rights-abortion-zika-20160829-snap-story.html [https://perma.cc/9LD2-MTJ6]; S.E. Smith, Disabled People Are Tired of Being a Talking Point in the Abortion Debate, Vox (May 29, 2019), https://www.vox.com/first-person/2019/5/29/18644320/abortion-ban-2019-selective-abortion-ban-disability [https://perma.cc/Z6U2-DUJZ].

89 Sharing Down Syndrome Arizona’s Motion to Intervene as Defendant and Memorandum in Support at 10, Isaacson v. Brnovich, No. 2:21-cv-01417-DLR (D. Ariz. Oct. 13, 2021) [hereinafter Motion to Intervene]; see also Amici Curiae Brief of Women Speak for Themselves et al. in Support of Defendants-Appellants and Reversal, Planned Parenthood of Ind. & Ky., Inc. v. Comm’r of the Ind. State Dep’t of Health, 917 F.3d 532 (2018) (No. 17-3163).

90 Disability Advocates Brief, supra note 62, at 9.

91 Perry, supra note 67; see also Arc of Ind., supra note 86; Disability Advocates Brief, supra note 62, at 13.

92 Perry, supra note 67.

93 E.g., Generations Ahead, Bridging the Divide (2009); Janice Edwards & Richard Ferrante, Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives (2009).

94 See, e.g., Katherine Beck Johnson & Laura Grossberndt, Fam. Rsch. Council, Issue Analysis No. IS21E01, Prenatal Nondiscrimination Acts: Why They Are Essential (2021); Motion to Intervene, supra note 87, at 11.

95 See Farrelly et al., supra note 76; Edwards & Ferrante, supra note 91.

96 Jesudason & Epstein, supra note 51, at 542-543; Kater-Kuipers et al., supra note 71, at 628-629; Farrelly et al., supra note 76, at 822; Edwards & Ferrante, supra note 91; Generations Ahead, supra note 91.

97 Mindy Roseman, Restricting Women’s Autonomy in the Name of “Eugenics”, L. & Pol. Econ. Project (Nov. 11, 2019), https://lpeproject.org/blog/restricting-womens-autonomy-in-the-name-of-eugenics/ https://perma.cc/K8UE-ARP5]; see also Willitts, supra note 65; Generations Ahead, supra note 91.

98 Roseman, supra note 95; Willitts, supra note 65; Generations Ahead, supra note 91.