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They Chose … Poorly: A Novel Cause of Action to Discourage Detrimental Genetic Selection
Published online by Cambridge University Press: 06 January 2021
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References
1 Grail Knight, Indiana Jones and the Last Crusade, IMDb.com, http://www.imdb.com/title/tt0097576/quotes [https://perma.cc/5LY8-KCTR] (last visited April 10, 2017) (“He chose … poorly.”).
2 See e.g., Savulescu, Julian, Procreative Beneficence: Why We Should Select the Best Children, 15 Bioethics 413, 414 (2001)CrossRefGoogle ScholarPubMed (“Eugenic selection of embryos is now possible by employing in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) …. Once the decision to have IVF is made, PGD has few ‘costs’ to couples, and people would be more inclined to use it to select less serious medical traits, such as a lower risk of developing Alzheimer Disease, or even for non-medical traits. PGD has already been used to select embryos of a desired gender in the absence of any history of sex-linked genetic disease”).
3 While most readers will have a passing understanding of the role of genetics and disease, the growing field of epigenetics research may be more foreign. Succinctly: epigenetics is relates to the way our unique environments impact our genetics through, for example, modulating genetic expression. See, e.g., Danielle Simmons, Epigenetic Influence and Disease. 1 Nature Educ. 6 (2008).
4 Knox, Rebecca, Preimplantation Genetic Diagnosis: Disease Control or Child Objectification?, 22 St. Louis U. Pub. L. Rev. 435 (2003)Google ScholarPubMed; Jenifer V. Turriziani, Designer Babies: The Need for Regulation on the Quest For Perfection (May 1, 2014) (unpublished student law scholarship essay, Seton Hall University) http://scholarship.shu.edu/cgi/viewcontent.cgi?article=1595&context=student_scholarship.
5 We use this arguably lacking term for lack of an alternative.
6 See e.g., Andrew Solomon, Far from the tree: Parents, children and the search for identity (2012); See also, Lee, M., Chan, B., & Clark, P. A., Deafness and Prenatal Testing: A Case Study Analysis, 14 Internet J. Fam. Prac. 1 (2016)Google Scholar (“To members of the Deaf community in the United States, deafness is not viewed as a disease or pathology to be treated or cured; instead it is seen as a difference in human experience.”).
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8 Andrew Solomon, Defiantly Deaf, NY Times Magazine, August 28, 1994 at 43 (Noting that “on average, deaf high-school graduates have a fourth-grade reading level.”).
9 See, e.g., Special Report: Genius, Suicide and Mental Illness: Insights into a Deep Connection, Scientific Am. (August 12, 2014), http://www.scientificamerican.com/report/genius-suicide-and-mental-illness-insights-into-a-deep-connection/ [https://perma.cc/5M3R-RPDZ].
10 Brock, supra note 7, at 388.
11 For example, Sharon Duchesneau and Candy McCullough. See, e.g., Spriggs, M., Lesbian Couple Create a Child Who Is Deaf Like Them, 28 J. Med. Ethics 283 (2002)CrossRefGoogle Scholar; Appel, Jacob M., Genetic Screenings and Child Abuse: Can PGS Rise to the Level of Criminality?, 80 UMKC L.Rev. 373 (2011)Google Scholar; Savulescu, Julian, Education and Debate: Deaf Lesbians, “Designer Disability,” and the Future of Medicine, 325 Brit. Med. J. 771 (2002)CrossRefGoogle Scholar.
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21 See e.g., State Resources, Child Welfare Information Gateway, https://www.childwelfare.gov/state-resources/ [https://perma.cc/YE5H-4U8C] (listing state statutes relating to child abuse and neglect).
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24 See Sarno, Gregory G., Annotation, Tort Liability for Wrongfully Causing One to Be Born, 83 Am. L. Rep. 3d 15, 66-76 (1978)Google Scholar; see, e.g., 42 Pa. Cons. Stat. § 8305(b) (West 1988) (expressly prohibiting “wrongful birth” and “wrongful life” causes of actions).
25 Am. Psychiatric Ass’n, Diagnostic and Statistical Manual of Mental Disorders: DSM-5 324-25 (5th ed. 2013).
26 Canadian Biotechnology Advisory Committee, A Brave New World: Where Biotechnology and Human Rights Intersect (2005).
27 Susannah Baruch, David Kaufman & Kathy L. Hudson, Genetic Testing of Embryos: Practices and Perspectives of U.S. In Vitro Fertilization Clinics, 89 Fertility & Sterility 1053, 1055 (2008).
28 See generally 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, 286-301 (2009) (discussing the lack of U.S. federal legislation regulating the use of PGD and the ethical implications presented by the use of PGD to limit a child’s opportunities).
29 Prince v. Massachusetts, 321 U.S. 158, 170 (1944).
30 See generally Knouse, Jessica, Reconciling Liberty and Equality in the Debate over Preimplantation Genetic Diagnosis, 2013 Utah L. Rev 107, 118-37 (2013)Google Scholar (discussing the liberty and equality arguments on both sides of the debate over nontherapeutic PGD).
31 See Lee, Chan, & Clark, supra note 6 at 2 (“Recently, a married couple who is genetically deaf approached an IVF Center with a request to create 2 to 3 embryos that would be genetically deaf. They believed that a hearing child would be detrimental to their family and their Deaf community.”); See also Darshak, M. Sanghavi, Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, N.Y. Times (Dec. 5, 2006), http://www.nytimes.com/2006/12/05/health/05essa.html (“Controlling a child’s genetic makeup, even to preserve what some would consider a disease, is the latest tactic of parents in an increasingly globalized society where identity seems besieged and in need of aggressive preservation.”).
32 Kafle, Saroj et al, Establishment of Preimplantation Genetic Diagnostic Technique for Hereditary Hearing Impairment, 15 IOSR J.D ental & Med. Sci. 72, 75 (2016)Google Scholar (“This study provides the first attempt of RFLP-PCR technology applications in determining genetic deafness, and shows the reliability of the technology in IVF clinical settings.”).
33 See Lee, Chan, & Clark, supra note 6 at 2 (“Recently, a married couple who is genetically deaf approached an IVF Center with a request to create 2 to 3 embryos that would be genetically deaf. They believed that a hearing child would be detrimental to their family and their Deaf community.”); See also Sanghavi, supra note 31 (“Controlling a child’s genetic makeup, even to preserve what some would consider a disease, is the latest tactic of parents in an increasingly globalized society where identity seems besieged and in need of aggressive preservation.”).
34 Notably, even therapeutic editing is controversial, as discussed herein. See also, Erika Check Hayden, Tomorrow’s Children: What Would Genome Editing Really Mean for Future Generations? 530 Nature 402, 404 (2016) (“The emergence of a powerful gene-editing technology, known as CRISPR–Cas9, has elicited furious debate about whether and how it might be used to modify the genomes of human embryos. The changes to their genomes would almost certainly be passed down to subsequent generations, breaching an ethical line that has typically been considered uncrossable. But emerging technologies are already testing the margins of what people deem acceptable. Parents today have unprecedented control over what they pass on to their children: they can use prenatal genetic screening to check for conditions such as Down’s syndrome, and choose whether or not to carry a fetus to term. Preimplantation genetic diagnosis allows couples undergoing in vitro fertilization to select embryos that do not have certain disease-causing mutations. Even altering the heritable genome — as might be done if CRISPR were used to edit embryos — is acceptable to some. Mitochondrial replacement therapy, which replaces a very small number of genes that a mother passes on with those from a donor, was approved last year in the United Kingdom for people who are at risk of certain genetic disorders.”).
35 Kenneson, Aileen, Braun, Kim Van Naarden, and Boyle, Coleen, GJB2 (connexin 26) Variants and Nonsyndromic Sensorineural Hearing Loss: A HuGE Review, 4 Genetics in Med. 258, 258 (2002)CrossRefGoogle ScholarPubMed (“Gap Junction Beta 2 or GJB2 (connexin 26), account for up to 50% of cases of nonsyndromic sensorineural hearing loss in some populations.”).
36 Id. at 262; See also, Kemperman, Martijn H., Hoefsloot, Lies H., & Cremers, Cor W.R.J., Hearing Loss and connexin 26, 95 J. Royal Soc’y Med. 171, 171 (2002)CrossRefGoogle ScholarPubMed.
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41 Renslow v. Mennonite Hospital, 367 N.E.2d 1250, 1255 (Ill.1977) (dealing with the issue of a breached duty to the mother, the same should hold true for a duty to the child).
42 Savulescu, Julian, Procreative Beneficence: Why We Should Select the Best Children, 15 Bioethics 413, 413 (2001)CrossRefGoogle ScholarPubMed.
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49 But see Brusky, Amy Elizabeth, Making Decisions for Deaf Children Regarding Cochlear Implants: The Legal Ramifications of Recognizing Deafness as a Culture Rather than a Disability, 1995 Wis. L. Rev. 235, 237 (1995)Google Scholar.
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51 Kirsten Rabe Smolensky, Creating Disabled Children: Parental Tort Liability for Preimplantation Genetic Interventions, 60 Hastings L.J. 299 (2008).
52 Jaime King, Duty to the Unborn: A Response to Smolensky, 60 Hastings L.J. 377 (2008).
53 Molina B. Dayal, Preimplantation Genetic Diagnosis, Medscape (Dec. 30, 2015), http://emedicine.medscape.com/article/273415-overview#a6.
54 See Jocelyn Kaiser, First proposed human test of CRISPR passes initial safety review, Science (June 21, 2016), http://www.sciencemag.org/news/2016/06/human-crispr-trial-proposed [https://perma.cc/YFL5-92V9].
55 See, e.g., Mythili Ramalingam, Durgadevi Punukollu & Mahmood Tahir, In vitro fertilization, 26 Obstetrics, Gynaecology & Reprod. Med. 200 (2016).
56 Id. at 204.
57 Id. at 203.
58 Handyside, Alan H. et al., Pregnancies from Biopsied Human Preimplantation Embryos Sexed by Y-specific DNA Amplification, 344 Nature 768, 768-9 (1990)CrossRefGoogle ScholarPubMed.
59 Id.
60 Id. at 769-70.
61 Id.
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73 Paul R. Brezina & William H. Kutteh, Clinical Applications of Preimplantation Genetic Testing, BMJ, Feb. 2015 at 350.
74 Ethics Committee of the American Society for Reproductive Medicine, Use of Preimplantation Genetic Diagnosis for Serious Adult Onset Conditions: A Committee Opinion,100 Fertility & Sterility 54, 56 (2013).
75 Braude, Peter R. et al., Non-Disclosure Preimplantation Genetic Diagnosis for Huntington's Disease: Practical and ethical dilemmas, 18 Prenatal Diagnosis 1422, 1422 (1998)3.0.CO;2-R>CrossRefGoogle ScholarPubMed.
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78 See generally, Amor, David J. & Cameron, Carolyn, PGD Gender Selection for Non-Mendelian Disorders with Unequal Sex Incidence, 23 Hum. Reprod. 729 (2008)CrossRefGoogle ScholarPubMed.
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81 See Richard Sherbaum, PGS and IVF - Preimplantation Genetic Screening Using Day 3 Embryo Biopsy, Advanced Fertility Center of Chicago, http://www.advancedfertility.com/pgd-day-3-biopsy.htm [https://perma.cc/837Q-SHJN].
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86 Parker, Malcolm H., Forbes, Kevin L. & Findlay, Ian, Eugenics or Empowered Choice? Community Issues Arising from Prenatal Testing, 42 Austl. & N.Z. J. Obstetrics & Gynaecology 10 (2002)CrossRefGoogle ScholarPubMed.
87 See Asch, Adrienne, Disability Equality and Prenatal Testing: Contradictory or Compatible?, 30 Fla. St. U. L. Rev. 315 (2003)Google ScholarPubMed; Petersen, Thomas Søbirk, Just Diagnosis? Preimplantation Genetic Diagnosis and Injustices to Disabled People, 31 J. Med. Ethics 231 (2005)CrossRefGoogle ScholarPubMed.
88 See Ronald T.K. Pang & P. C. Ho, Designer Babies, 26 Obstetrics, Gynaecology & Reprod. Med. 59, 60 (2016) (“At this moment, the risks and complications of using engineering nuclease or mtDNA replacement therapy in creating designer babies are still not fully known. In many countries, these procedures are still prohibited by law”).
89 Id.
90 See Kou Sueoka, Preimplantation Genetic Diagnosis: An Update on Current Technologies & Ethical Considerations, 15 Reprod. Med. & Bio. 69 (2016).
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92 The European Society for Human Reproduction and Embryology (ESHRE) published a set of guidelines for the best practices of PGD. See, e.g., Thornhill, Alan R. et al., ESHRE PGD Consortium ‘Best practice Guidelines for Clinical Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Screening (PGS), 20 Hum. Reprod. 35 (2005)CrossRefGoogle Scholar (recognizing that while ESHRE’s guidelines on PGD are not legally binding, they may be incorporated into countries’ laws and regulations); G.L. Harton et al., ESHRE PGD Consortium Best Practice Guidelines for Amplification-Based PGD, 26 Hum. Reprod. 33 (2011) (updating the guidelines established in ESHRE’s PGD Consortium).
93 King, Jaime, Predicting Probability: Regulating the Future of Preimplantation Genetic Screening, 8 Yale J. Health Pol’y, L., & Ethics 283, 358 (2008)Google ScholarPubMed. Within the last five years, numerous medical, legal, and ethical scholars have proposed that a variety of entities oversee ART and PGS. Id. at 323.
94 Nelson, Erin L., Comparative Perspectives on the Regulation of Assisted Reproductive Technologies in the United Kingdom and Canada, 43 Alta. L. Rev. 1023, 1048 (2005)Google Scholar.
95 PGD conditions licensed by the HFEA, Human Fertilisation & Embryology Authority, http://guide.hfea.gov.uk/pgd/ [https://perma.cc/P5VU-6AVL].
96 Rotem Sorek, Victor Kunin & Philip Hugenholtz, CRISPR—A Widespread System that Provides Acquired Resistance Against Phages in Bacteria and Archaea, 6 Nature Rev. Microbiology 181, 186 (2008).
97 Id.
98 Ibtissem Grissa, Gilles Vergnaud & Christine Pourcel, The CRISPRdb Database and Tools to Display CRISPRs and to Generate Dictionaries of Spacers and Repeats, 8 BMC Bioinformatics 172 (2007).
99 Alex Reis et al., CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology, New England BioLabs Expressions (2014), https://www.neb.com/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology [https://perma.cc/MTV3-8FXA].
100 Hsu, Patrick D. et al., Development and Applications of CRISPR-Cas9 for Genome Engineering, 157 Cell 1262 (2014)CrossRefGoogle ScholarPubMed.
101 Fabre, Laetitia et al., CRISPR is an Optimal Target for the Design of Specific PCR Assays for Salmonella enterica Serotypes Typhi and Paratyphi A, 8 PLoS Neglected Tropical Diseases 1, 34 (2014)CrossRefGoogle ScholarPubMed.
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110 See, e.g., Alpert Prize Recognizes CRISPR Pioneers, Harvard Med. Sch. (March 9, 2016), http://hms.harvard.edu/news/alpert-prize-recognizes-crispr-pioneers [https://perma.cc/6JY2-RU2Z] (“The Warren Alpert Foundation Prize recognizes scientists whose research has led to the prevention, cure or treatment of human diseases or disorders and constitutes a seminal scientific finding that holds great promise for ultimately changing our understanding of, or ability to treat, disease.”).
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116 See Dov Fox, Selective Procreation in Public and Private Law, 64 UCLA L.R ev. Discourse 294, 298 (2016).
117 Benston, supra note 47.
118 Greely, supra note 20, at 86-88.
119 Id. at 193-94.
120 Wilkinson, Dominic, et al., Protecting Future Children from In-Utero Harm, 30 Bioethics 425, 432 (2016)CrossRefGoogle ScholarPubMed.
121 Congenital Disabilities (Civil Liability) Act 1976, c. 28, § 1 (“If a child is born disabled as the result of such an occurrence before its birth as is mentioned in subsection (2) below, and a person (other than the child’s own mother) is under this section answerable to the child in respect of the occurrence, the child’s disabilities are to be regarded as damage resulting from the wrongful act of that person and actionable accordingly at the suit of the child.”) (emphasis added).
122 In re M.M., 133 A.3d 379, 390-92 (Vt. 2015) (Robinson, J., dissenting) (citing various authorities).
123 E.g., Bridie Jabour, Zoe's Law: Fred Nile Accused of Using Death of Foetus to Further Anti-Abortion Agenda, Guardian (Nov. 9, 2015), https://www.theguardian.com/australia-news/2015/nov/10/zoes-law-fred-nile-accused-of-using-death-of-baby-to-further-anti-abortion-agenda [https://perma.cc/5VVD-C97G].
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128 A proposed criminal statute drafts language that, while acknowledging the right to abort her fetus, states the mother should be liable for interfering with the State’s interests of a healthy child if the mother chooses not to abort:
While a woman has the right to obtain an abortion, a woman must refrain from the use of alcohol, drugs, and tobacco until termination of the pregnancy in order to protect the State and the child from such harmful effects in the event that the mother has a change of heart and decides to carry the fetus to term.
Congdon, Patricia R., Prenatal Prosecution: Taking A Stand for the State and the Well-Being of its Soon-to-Be Citizens, 5 Charleston L. Rev. 621, 645 (2010)Google Scholar; see Drabble, Laurie et al., State Responses to Alcohol Use and Pregnancy: Findings from the Alcohol Policy Information System, 14 J. Soc. Work Prac. Addictions 191 (2014)CrossRefGoogle ScholarPubMed; Duso, Adam J. & Stogner, John, Re-Evaluating the Criminalization of In Utero Alcohol Exposure: A Harm-Reduction Approach, 24 Wm. & Mary Bill Rts. J. 621, 629-640 (2015)Google Scholar (discussing the multiple approaches to maternal alcohol use and the use of the law to limit in utero alcohol exposure).
129 Katrina Hui, Cara Angelotta & Carl E. Fisher , Criminalizing Substance Use in Pregnancy: Misplaced Priorities, 112 Addiction (2017) (forthcoming 2017). Although statutes have been enacted, and the tide seems to be slowly turning in favor or criminal sanctions against women who harm their fetuses in utero. “In July 2016, Tennessee allowed its ‘fetal-assault’ statute to expire. This controversial law was the first to criminalize substance use explicitly during pregnancy.” Id. at 1.
130 Isaacson v. Horne, 716 F.3d 1213, 1217 (9th Cir. 2013) (“Since Roe v. Wade, … the Supreme Court case law concerning the constitutional protection accorded women with respect to the decision whether to undergo an abortion has been unalterably clear regarding one basic point, although it has varied in other respects: a woman has a constitutional right to choose to terminate her pregnancy before the fetus is viable. A prohibition on the exercise of that right is per se unconstitutional. While the state may regulate the mode and manner of abortion prior to fetal viability, it may not proscribe a woman from electing abortion, nor may it impose an undue burden on her choice through regulation.”).
131 See, e.g., Tesar v. Anderson, 789 N.W.2d 351, 362 (Wis. Ct. App. 2010) (“The Stallman court held that the defendant mother owed no legally cognizable duty to her developing fetus.”); Chenault v. Huie, 989 S.W.2d 474, 476, 478 (Tex. Ct. App. 1999) (“To date, the only state court to address squarely the public policy concerns raised by imposing a legal duty on a pregnant woman toward her unborn child is the Illinois Supreme Court …. [T]he recognition of a general legal duty of care owed by a pregnant woman to her fetus, which is a necessary prerequisite to imposing any tort liability on Huie, has far broader implications than simply holding drug-abusing mothers civilly liable to their later born children. We conclude, therefore, that current law in Texas relating to negligent and grossly negligent conduct does not impose or encompass a general legal duty owed by a mother to her fetus.”). Still, some courts have held some parents even criminally accountable in some for their negligent actions during pregnancy that knowingly, or should have knowingly ultimately harmed the fetus and eventual child. Appel, Jacob M., Genetic Screening and Child Abuse: Can PGS Rise to the Level of Criminality?, 80 UMKC L.R ev. 373 (2011)Google Scholar.
132 See, e.g., Embryonic and Fetal Research Laws, National Conference of State Legislatures (Jan. 1, 2016), http://www.ncsl.org/research/health/embryonic-and-fetal-research-laws.aspx [https://perma.cc/G7TH-33BA] (listing state statutes regarding embryonic stem cells).
133 O'Brien, Molly, Note, An Intersection of Ethics and Law: The Frozen Embryo Dilemma and the Chilling Choice Between Life and Death, 32 Whittier L. Rev. 171, 177 (2010)Google Scholar.
134 See e.g., Crockin, Susan L. & Debele, Gary A., Ethical Issues in Assisted Reproduction: A Primer for Family Law Attorneys, 27 J. Am. Acad. Matrimonial Law 289, 302-03 (2015)Google Scholar (citing to the Tennessee Supreme Court’s ruling in Davis v. Davis).
135 Davis v. Davis, 842 S.W.2d 588, 597 (Tenn. 1992).
136 See, e.g., Embryonic and Fetal Research Laws, supra note 132. Efforts to find reasoning to support the use of embryos notwithstanding; Guenin, Louis M., The Morality of Unenabled Embryo Use—Arguments that Work and Arguments that Don't, 79 Mayo Clinic Proc. 801, 808 (2004)CrossRefGoogle ScholarPubMed (discussing arguments offered in support of using human embryos in research and therapy).
137 Marvin Lee, Benjamin Chan & Clark, Peter A., Deafness and Prenatal Testing: A Case Study Analysis, 14 Internet J. Fam. Prac. 1, 7 (2016)Google Scholar.
138 Francesco Paolo Busardò et al., The Evolution of Legislation in the Field of Medically Assisted Reproduction and Embryo Stem Cell Research in European Union Members, 2014 BioMed Res. Int’l 1(2014).
139 Kai Arzheimer, Strange Bedfellows: the Bundestag’s Free Vote on Pre-Implantation Genetic Diagnosis (PGD) Reveals how Germany’s Restrictive Bioethics Legislation is Shaped by a Christian Democratic/New Left Issue-Coalition, Res. & Pol., 2 (2015).
140 Legge 19 febbraio 2004, n.40, G.U., Feb. 19, 2004, n.45 (It.) (an Italian statute on assisted reproduction).
141 Law On Ethics Of Biomedical Research (Act. No. VIII-1679/2000) (Lith.).
142 Fortpflanzungsmedizingesetz [FMedG] Bundesgesetzblatt I No. 25/2015, as amended, https://www.ris.bka.gv.at/GeltendeFassung.wxe?Abfrage=Bundesnormen&Gesetzesnummer=10003046 [https://perma.cc/7ESE-P58K] (Austria).
143 Celia Luterbacher, Swiss Back Genetic Testing of Embryos (Again), Swiss Info (June 5, 2016, 6:37 PM), http://www.swissinfo.ch/directdemocracy/june-5-vote_swiss-vote--again--on-legalising-genetic-testing-of-embryos/42200700 [https://perma.cc/V33H-XJ4L].
144 Matthew Young, IVF Embryo Testing Gets Go-Ahead in Ireland, BioNews (Dec. 3, 2012), http://www.bionews.org.uk/page_221362.asp [https://perma.cc/GME6-J7TF].
145 Council of Europe, Details of Treaty No.164, https://www.coe.int/en/web/conventions/full-list/-/conventions/treaty/164 [https://perma.cc/F365-BSDE].
146 Zafran, Ruth, Non-Medical Sex Selection by Preimplantation Genetic Diagnosis: Reflections on Israeli Law and Practice, 9 N.C. J.L. & Tech. 187 (2008)Google Scholar.
147 Human Fertilization and Embryology (HFE) Act 1990, c. 22, sch. 2 (Eng.).
148 Shannon O’Neill & Jeff Blackmer, Assisted Reproduction in Canada: An Overview of Ethical and Legal Issues and Recommendations for the Development of National Standards, Canadian Med. Assoc., at 10-11 (2015), available at https://www.cma.ca/Assets/assets-library/document/en/advocacy/assisted-reproduction-in-canada-e.pdf [https://perma.cc/A5F8-82W3].
149 Int’l Fed’n of Fertility Soc’ys, Surveillance 2010, at 10-11, available at: http://www.iffs-reproduction.org/?page=Surveillance [https://perma.cc/7PB4-FXYQ].
150 Jones, Howard W. et al., International Federation of Fertility Societies Surveillance 2010: Preface, 95 Fertility and Sterility 491 (2011)CrossRefGoogle ScholarPubMed.
151 Fertility Clinic Success Rate and Certification Act of 1992, 42 U.S.C. § 263a (2015).
152 Sosnow, Robin E., Genetic Material Girl: Embryonic Screening, the Donor Child, and the Need for Statutory Reform, 7 J. Health & Biomedical L. 609, 610 (2011)Google Scholar.
153 Guidelines, Am. Soc’y of Reproductive Med., https://www.asrm.org/Guidelines/ (last visited Nov. 9, 2016).
154 Reproduction Health Techs.’ Project, http://www.rhtp.org/fertility/pgd/ [https://perma.cc/6C6S-V646 ] (last visited Apr. 17, 2017).
155 See, e.g., Schiavone, supra note 28, at 284; John A. Robertson, Embryos, Families, and Procreative Liberty: The Legal Structure of the New Reproduction, 59 S. Cal. L. Rev. 939, 951-954 (1985); Dena S. Davis, Genetic dilemmas: Reproduction Technology, Parental Choices, and Children's Futures 1-8 (2001); Melinda A. Roberts, Can It Ever Be Better Never to Have Existed At All? Person-Based Consequentialism and a New Repugnant Conclusion, 20 J. of Applied Phil. 159, 159-163 (2003); Ronald M. Green, Parental Autonomy and the Obligation not to Harm One's Child Genetically, 25 J.L. & Med. Ethics 5, 5 (1997); Thomas A. Burns, When Life Is an Injury: An Economic Approach to Wrongful Life Lawsuits, 52 Duke L.J. 807 (2003); David Heyd, Genethics: Moral Issues in the Creation of People 1-18 (1994), http://publishing.cdlib.org/ucpressebooks/view?docId=ft309nb1nd;chunk.id=0; doc.view=print [https://perma.cc/VD25-VWMR]; Silvia Camporesi, Choosing Deafness with Preimplantation Genetic Diagnosis: An Ethical Way to Carry on a Cultural Bloodline?, 19 Cambridge Quarterly of Healthcare Ethics 86 (2010); Bonnie Steinbock, Wrongful Life and Procreative Decisions in Harming Future Persons, 155, 155-157 (Melinda Roberts & David Wasserman eds. 2009).
156 See, e.g., Isabel A. Karpin, Choosing Disability: Preimplantation Genetic Diagnosis and Negative Enhancement, 15 J.L. & Med. 89, 91 (2007).
157 Skinner v. Oklahoma ex rel. Williamson, 316 U.S. 535, 545 (1942) (in noting that sterilization is the deprivation “of a basic liberty”).
158 Griswold v. Connecticut, 381 U.S. 479, 487 (1965) (finding that procreation, i.e., “ marital privacy is protected, as being within the protected penumbra of specific guarantees of the Bill of Rights.”).
159 Roe v. Wade, 410 US 113, 153 (1973) (“This right of privacy, whether it be founded in the Fourteenth Amendment's concept of personal liberty and restrictions upon state action, as we feel it is, or, as the District Court determined, in the Ninth Amendment's reservation of rights to the people, is broad enough to encompass a woman's decision whether or not to terminate her pregnancy.”).
160 Griswold v. Connecticut, 381 U.S. 479, 484 (1965).
161 NAACP v. Alabama ex rel. Patterson, 357 U.S. 449, 462 (1958).
162 Griswold v. Connecticut, 381 U.S. 479, 484 (1965) (“[S]pecific guarantees in the Bill of Rights have penumbras, formed by emanations from those guarantees that help give them life and substance…. Various guarantees create zones of privacy…. The Third Amendment, in its prohibition against the quartering of soldiers ‘in any house’ in time of peace without the consent of the owner, is another facet of that privacy.”); See also L. Jean Camp, Web Security and Privacy: An American Perspective, 15 Information Soc’y 249, 253 (1999) (noting that “[t]he Court found the right to privacy implied in the Constitution in the First, Third, Fourth, Fifth, Ninth, and Fourteenth Amendments … Together, the Third and Fourth Amendments create a region of privacy, a space inviolate by the government except in constrained circumstances”).
163 Olmstead v. United States, 277 U.S. 438, 480 (1928) (Brandeis, J., Dissenting); Katz v. United States, 389 U.S. 347, 359 (1967).
164 See generally Note, Formalism, Legal Realism, and Constitutionally Protected Privacy Under the Fourth and Fifth Amendments, 90 Harv. L. Rev. 945 (1977).
165 Troxel v. Granville, 530 U.S. 57, 65 (2000) (stating that “[t]he Fourteenth Amendment provides that no State shall ‘deprive any person of life, liberty, or property, without due process of law.’ We have long recognized that the Amendment's Due Process Clause, like its Fifth Amendment counterpart, ‘guarantees more than fair process.’ … The Clause also includes a substantive component that ‘provides heightened protection against government interference with certain fundamental rights and liberty interests.’ … The liberty interest at issue in this case—the interest of parents in the care, custody, and control of their children—is perhaps the oldest of the fundamental liberty interests recognized by this Court.”).
166 Meyer v. Nebraska, 262 U.S. 390, 399 (1923) (finding that “liberty … the term has received much consideration and some of the included things have been definitely stated. Without doubt, it denotes not merely freedom from bodily restraint but also the right of the individual to … establish a home and bring up children …”); Pierce v. Society of Sisters, 268 U.S. 510, 534-35 (1925) (stating that “liberty of parents and guardians to direct the upbringing and education of children under their control.”); Prince v. Massachusetts, 321 U.S. 158, 166(1944) (stating that “It is cardinal with us that the custody, care and nurture of the child reside first in the parents, whose primary function and freedom include preparation for obligations the state can neither supply nor hinder…. And it is in recognition of this that these decisions have respected the private realm of family life which the state cannot enter.”).
167 Schiavone, supra note 28, at 291.
168 Parham v. J.R., 442 U.S. 584, 602 (1979) (“some parents may at times be acting against the interests of their children”); Schleifer by Schleifer v. City of Charlottesville, 159 F.3d 843, 852 (4th Cir. 1998) (“The Supreme Court has rejected the view that parents possess an unqualified right to raise children …. We are mindful that the Supreme Court has suggested in other contexts that parents may possess a fundamental right against undue, adverse interference by the state.”).
169 “Our jurisprudence historically has reflected Western civilization concepts of the family as a unit with broad parental authority over minor children. Our cases have consistently followed that course; our constitutional system long ago rejected any notion that a child is ‘the mere creature of the State’ and, on the contrary, asserted that parents generally ‘have the right, coupled with the high duty, to recognize and prepare [their children] for additional obligations.’ … Surely, this includes a ‘high duty’ to recognize symptoms of illness and to seek and follow medical advice. The law's concept of the family rests on a presumption that parents possess what a child lacks in maturity, experience, and capacity for judgment required for making life's difficult decisions. More important, historically it has recognized that natural bonds of affection lead parents to act in the best interests of their children.”
Parham v. J.R., 442 US 584, 602 (1979)) (quoting Pierce v. Society of Sisters, 268 U.S. 510, 535 (1925)).
170 Prince v. Massachusetts, 321 U.S. 158, 166-67 (1944) (“But the family itself is not beyond regulation in the public interest, as against a claim of religious liberty…. And neither rights of religion nor rights of parenthood are beyond limitation. Acting to guard the general interest in youth's well being, the state as parens patriae may restrict the parent's control by requiring school attendance, regulating or prohibiting the child's labor and in many other ways. Its authority is not nullified merely because the parent grounds his claim to control the child's course of conduct on religion or conscience. Thus, he cannot claim freedom from compulsory vaccination for the child more than for himself on religious grounds. The right to practice religion freely does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death.”) (citations omitted).
171 Child Abuse Prevention and Treatment and Adoption Reform, Pub. L. No. 93-247, 88 Stat. 4 (1974) (codified as amended by the CAPTA Reauthorization Act of 2010, Pub. L. No. 111-320, 124 Stat. 3459 (2010) at 42 U.S.C.A. §§ 5101-5119c (2012)).
172 CAPTA Reauthorization Act of 2010, Pub. L. No. 111-320, 124 Stat. 3459 (2010); 45 C.F.R. 1340.2 (1983) (“Child abuse and neglect means the physical or mental injury, sexual abuse or exploitation, negligent treatment, or maltreatment of a child under the age of eighteen, or the age specified by the child protection law of the State, by a person including any employee of a residential facility or any staff person providing out of home care who is responsible for the child's welfare under circumstances indicating harm or threatened harm to the child's health or welfare. The term encompasses both acts and omissions on the part of a responsible person”), removed and replaced by 80 Fed. Reg. 16577 (Mar. 30, 2015), See also State Resources, Child Welfare Info. Gateway, https://www.childwelfare.gov/state-resources/ [https://perma.cc/5BRE-QZV8] (Listing state statutes relating to child abuse and neglect).
173 Carey v. Population Services Int'l, 431 U.S. 678 (1977).
174 Buck v. Bell, 274 U.S. 200 (1927).
175 Poe v. Lynchburg Training Sch. and Hosp., 518 F. Supp. 789 (W.D. Va. 1981).
176 Note that Congress or the individual states may not have the authority to limit areas of genetic modification. Glahn, Jason C., I Teach You the Superman: Why Congress Cannot Constitutionally Prohibit Genetic Modification, 25 Whittier L. Rev. 409, 439 (2003)Google ScholarPubMed.
177 Schiavone, supra note 28, at 313.
178 Richard Weiss, Halachic Supervision for Assisted Reproductive Technology, Yoatzot.org, http://www.yoatzot.org/articles/?id=659 (last visited on Mar. 28, 2017).
179 For a more international analysis, See, e.g., Giesen, Ivo, The Use and Influence of Comparative Law in ‘Wrongful Life’ Cases, 8 Utrecht L.R ev 35 (2012)CrossRefGoogle Scholar; Sheldon, Tony, Court awards damages to disabled child for having been born, 326 British Med. J. 784 (2003)CrossRefGoogle ScholarPubMed.
180 Albertson v. Pierce County, No. 71317-5-I (Wash. Ct. App. Feb. 23, 2015) (“In Harbeson [v. Parke-Davis, Inc., 656 P.2d 483 (1983)] the court considered whether plaintiffs could maintain a wrongful birth and wrongful life action.”).
181 Elsheref v. Applied Materials, Inc., 167 Cal. Rptr. 3d 257, 263 (Cal. Ct. App. 2014). (“In Turpin v. Sortini, the Supreme Court recognized a cause of action for a preconception tort, stating that a child is ‘entitled to recover against the negligent party’ ….”) (alteration in original) (citations omitted).
182 Me. Stat. tit. 24, § 2391 (2017).
183 Grossbaum v. Genesis Genetics Inst., LLC, No. 07-1359, 2011 WL 2462279 at *4 (D.N.J. June 10, 2011) (“New Jersey law permits both wrongful birth and wrongful life causes of action, see Procanik by Procanik v. Cillo ….”)
184 Gleitman v. Cosgrove, 227 A. 2d 689 - NJ: Supreme Court 1967
185 Schuster, W. Ryan, Note, Rights Gone Wrong: A Case Against Wrongful Life, 57 Wm. & Mary L. Rev. 2329, 2330 (2016)Google Scholar.
186 Macurdy, Allan H., Disability Ideology and the Law School Curriculum, 4 B.U. Pub. Int. L.J. 443 (1994)Google Scholar.
187 Curlender v. Bio-Science Laboratories, 165 Cal. Rptr. 477, 498 (Cal. Ct. App. 1980).
188 Stewart v. Botha 2008 (6) SA 310 (SCA) (S. Afr.); McKay v. Essex Area Health Authority (1982) QB 1166 (Eng.); Edwards v Blomeley [2002] NSWSC 460; Harriton v Stephens [2002] NSWSC 461; Waller v James [2002] NSWSC 462 (Austl.); A.M. Duguet, Wrongful life: The Recent French Cour de Cassation Decision, 9 Eur J. Health L. 139 (2002).
189 Sagit Mor, The Dialectics of Wrongful Life and Wrongful Birth Claims in Israel: A Disability Critique, in 63 Studies in Law, Politics, and Society 113 (Emerald Group Publishing Ltd. 2014).
190 Siemieniec v. Lutheran General Hospital, 512 N.E.2d 691, 697 (Ill. 1987) (internal quotation marks omitted) (citation omitted).
191 Martin, Harvey, Reproductive Autonomy Rights and Genetic Disenhancement: Sidestepping the Argument from Backhanded Benefit, 21 J. Applied Phil. 125 (2004)Google Scholar.
192 Taylor Irene Dudley, A Fair Hearing for Children, 9 Whittier J. Child. & Fam. Advoc. 341, 357 (2009).
193 Kurchak, supra note 17.
194 Karpin, supra note 156.
195 E.g., Americans with Disabilities Act of 1990, Pub. L. No. 101–336, § 104 Stat. 327, (1990) (codified at 42 U.S.C. § 12101).
196 Hensel, Wendy Fritzen, The Disabling Impact of Wrongful Birth and Wrongful life actions, 40 Harv. C.R.-C.L. L. Rev. 141, 181 (2005)Google Scholar.
197 For a catalogue of rare diseases, see Nat’l Org. for Rare Disorders, http://rarediseases.org/ [https://perma.cc/Q5WH-KW4A].
198 See, e.g., McChristi R. George et al., An Exploration of Family Therapists' Beliefs About the Ethics of Conversion Therapy: The Influence of Negative Beliefs and Clinical Competence with Lesbian, Gay, and Bisexual Clients, 41 J. Marital & Fam. Therapy 42, 45 (2015).
199 See, e.g., Southern Poverty Law Center: LGBT Rights, https://www.splcenter.org/issues/lgbt-rights/conversion-therapy [https://perma.cc/538U-MWC3] (Last visited Apr. 17, 2017).
200 See, e.g., N.J.S.A. § 45:1-55 (2013).
201 Jacobellis v. Ohio, 378 U.S. 184, 197 (1964) (Stewart, J., concurring) (stating “I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description; and perhaps I could never succeed in intelligibly doing so. But I know it when I see it”).
202 See generally Bruce D. Meyer & Wallace K.C. Mok, Disability, Earnings, Income and Consumption, (Nat’l Bureau of Econ. Research., Working No. 18869, 2013), www.nber.org/papers/w18869 [https://perma.cc/S2NC-HKC5] (Looking at data for those formerly abled, and now disabled, the authors find that “he economic consequences of disability are frequently profound. Ten years after disability onset, a person with a chronic and severe disability on average experiences a 79 percent decline in earnings, a 35 percent decline in after-tax income, a 24 percent decline in food and housing consumption and a 22 percent decline in food consumption. Third, economic circumstances differ sharply across disability groups. The outcome decline for the chronically and severely disabled is often more than twice as large as that for the average disabled head.”; see generally Ashleigh Hillier & Monica Galizzi, Employment Outcomes for Young Adults with Autism Spectrum Disorders, 10 Rev. Disability Stud. 69 (2014).
203 Owen, David G., The Five Elements of Negligence, 35 Hofstra L. Rev. 1671, 1672 (2007)Google Scholar.
204 Id. at 1672 nn. 5, 9.
205 In re Richardson, 284 So. 2d 185, 187 (La. Ct. App. 1973) (“In Louisiana our law is designed to protect and promote the ultimate best interest of a minor.”); In re AMP, 708 N.E.2d 1235, 1238 (App. Ct. 1999) (citing statutory language: “If the recipient is a minor or is under guardianship, such recipient's parent or guardian is authorized, only with the approval of the court, to provide informed consent for participation of the ward in any such services which the guardian deems to be in the best interests of the ward.” 405 ILCS 5/2-110 (West 1996).”)
206 Nicole Hebert, Creating a Life to Save a Life: An Issue Inadequately Addressed by the Current Legal Framework Under Which Minors are Permitted to Donate Tissue and Organs, 17 S. Cal. Interdisc. L.J. 337, 341 (2007).
207 Robertson, John A, Organ donations by incompetents and the substituted judgment doctrine, 76 Columbia L. Rev. 48 (1976)CrossRefGoogle ScholarPubMed. The substituted judgment standard/doctrine, allows a surrogate decision maker to make the best possible decision for a child or an incompetent patient, that best tracks what that child or incompetent individual might have chosen, had they had the necessary competencies. See also Fanning v. Bell, 82 F. Supp. 3d 60, 69 (D.C. 2015) (noting that this standard provides “broad authority to act for the incompetent in all cases and substitute his or her judgment for that of the incompetent…. The right to act for the incompetent in all cases has become recognized in this country as the doctrine of substituted judgment and is broad enough not only to cover property but also to cover all matters touching on the well-being of the ward.”) (citations omitted).
208 Hart v. Brown, 289 A.2d 386 (Conn. 1972).
209 The family immunity doctrine is a “uniquely American tradition.” McClean, Marley, Children's Anatomy v. Children's Autonomy: A Precarious Balancing Act with Preimplantation Genetic Diagnosis and the Creation of “Savior Siblings”, 43 Pepp. L. Rev. 837, 874 (2016)Google Scholar (citing Michele Goodwin, A View from the Cradle: Tort Law and the Private Regulation of Assisted Reproduction, 59 Emory L. J. 1039, 1082 (2010)).
210 Holodook v. Spencer, 324 N.E.2d 338, 345 (N.Y. Ct. App. 1974).
211 Bondurant v. Bondurant, 386 So.2d 705, 706 (La. Ct. App. 1980). See generally Schiavone, supra note 28, at 312 n.176 (“A majority of states have created one or more exceptions it the traditional parental immunity doctrine.”).
212 See Edward Sylvester, Chenault v. Huie: Denying the Existence of a Legal Duty Between a Mother and Her Unborn Child, 33 Akron L. Rev. 1, 6 (2015).
213 Goodwin, supra note 209.
214 Wrongful life action, Cal. Civ. Code § 43.6 (1984).
215 Chenault v. Huie, 989 S.W.2d 474, 478 (Tex. Ct. App. 1999).
216 Collins, Elizabeth F., An Overview and Analysis: Prenatal Torts, Preconception Torts, Wrongful Life, Wrongful Death, and Wrongful Birth: Time for a New Framework, 22 J. Fam. L. 677, 680-681 (1983)Google Scholar.
217 Renslow v. Mennonite Hospital, 367 N.E.2d 1250, 1255 (Ill. 1977).
218 Stein, Jillian T., Backdoor Eugenics: The Troubling Implications of Certain Damages Awards in Wrongful Birth and Wrongful Life Claims, 40 Seton Hall L. Rev. 1117 (2010)Google Scholar.
219 Green, Ronald M., Parental Autonomy and the Obligation Not to Harm One's Child Genetically, 25 J. L. Med. & Ethics 5 (1997)CrossRefGoogle Scholar.
220 Misrepresentation Act 1967, c. 7 (Eng., Wales), http://www.legislation.gov.uk/ukpga/1967/7/enacted (“An Act to amend the law relating to innocent misrepresentations and to amend sections 11 and 35 of the Sale of Goods Act 1893.”).
221 Kelly, Michael B., The Rightful Position in “Wrongful Life” Actions, 42 Hastings L.J. 505, 549 (1991)Google ScholarPubMed.
222 Derek Parfit, Reasons and persons (Oxford Univ. Press ed., 1984).
223 Richard A. Bales, Constitutional Defense of Qui Tam, 2001 Wis. L. Rev. 381, 383 (2001).
224 Lee, Thomas R., Comment, The Standing of Qui Tam Relators Under the False Claims Act, 57 Univ. Chi. L. Rev. 543, 543 (1990)CrossRefGoogle Scholar.
225 Adams v. Woods, 6 U.S. (2 Cranch) 336, 341 (1805). See generally Lee, supra note 224.
226 Bales, supra note 223, at 385-87.
227 Unique Prod. Sols., Ltd. v. Hy-Grade Valve, Inc., 765 F. Supp. 2d 997, 1001 (N.D. Ohio 2011).
228 31 U.S.C. §§ 3729-3733 (2012); Vt. Agency of Nat. Res. v. United States ex rel. Stevens, 529 U.S. 765, 778 (2000) (“it leaves no room for doubt that a qui tam relator under the FCA has Article III standing.”).
229 18 U.S.C. § 962 (2012) (“Whoever issues or delivers a commission within the United States for any vessel, to the intent that she may be so employed—Shall be fined under this title or imprisoned not more than three years, or both. Every such vessel, her tackle, apparel, and furniture, together with all materials, arms, ammunition, and stores which may have been procured for the building and equipment thereof, shall be forfeited, one half to the use of the informer and the other half to the use of the United States.”) (emphasis added); 46a U.S.C. 723 (Every vessel which shall be engaged or employed in carrying or transporting any property whatsoever, taken from any wreck, from the sea, or from any of the keys or shoals, within the jurisdiction of the United States, on the coast of Florida, to any foreign port, shall, together with her tackle, apparel, and furniture, be forfeited, and all forfeitures incurred by virtue of this section shall accrue, one moiety to the informer and the other to the United States”) (emphasis added); 25 U.S.C. § 201 (2012) (“All penalties which shall accrue under title 28 of the Revised Statutes shall be sued for and recovered in an action in the nature of an action of debt, in the name of the United States, before any court having jurisdiction of the same, in any State or Territory in which the defendant shall be arrested or found, the one half to the use of the informer and the other half to the use of the United States, except when the prosecution shall be first instituted on behalf of the United States, in which case the whole shall be to their use.”) (emphasis added). Qui Tam provisions were recently removed from patent law under the America Invents Act 35 U.S.C. § 292 under a revision of the false patent related laws.
230 See generally Evan Caminker, Comment, The Constitutionality of Qui Tam Actions, 99 Yale L.J. 341 (1989) (discussing the procedure of a qui tam action and comparing and contrasting a qui tam action with a citizen suit).
231 Schiavone, supra note 28 (noting that they are not doing so “to satisfy their own autonomy and their own needs, without respect to the future autonomy of the child in question.”).
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