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Procreative Liberty and Harm to Offspring in Assisted Reproduction
Published online by Cambridge University Press: 06 January 2021
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Assisted reproductive technologies (“ARTs”) have enabled many infertile couples to have children but have long been controversial. Opposition initially focused on the “unnaturalness” of laboratory conception and the doubts that healthy children would result. Once children were born, ethical debate shifted to the status and ownership of embryos and the novel forms of family that could result.
The new century has brought forth both new and old ethical concerns. The growing capacity to screen the genomes of embryos has sparked fears of eugenic selection and alteration. In addition, concerns about safety have reasserted themselves. Several studies suggest that in vitro fertilization (“IVF”) may be associated with lower birth weights and major malformations. Ethical attention has also focused on whether all persons seeking ARTs should be granted access to them, regardless of their child-rearing ability, age, disability, health status, marital status, or sexual orientation.
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References
1 “Assisted reproductive technologies” (“ARTs”) refer in this Article to in vitro fertilization (“IVF”), artificial insemination, sperm and egg donation, surrogacy, and other forms of non-coital reproduction.
2 DEREK PARFIT, REASONS AND PERSONS ch. 16 (1984).
3 Although persons coitally reproducing in those circumstances might be held responsible for their actions, it is more difficult to prevent them from having children than it is to prevent access to ARTs for that purpose.
4 Some studies had suggested that women whose ovaries had been stimulated to produce multiple eggs had a higher rate of ovarian cancer, but this risk has not been substantiated. Venn, Alison et al., Risk of Cancer After Use of Fertility Drugs with In-Vitro Fertilisation, 354 LANCET 1586 (1999)CrossRefGoogle ScholarPubMed; Potashnik, Gad et al., Fertility Drugs and the Risk of Breast and Ovarian Cancers: Results of a Long-Term Follow-Up Study, 71 FERTILITY & STERILITY 853 (1999)CrossRefGoogle ScholarPubMed; Ness, Roberta B. et al., Infertility, Fertility Drugs, and Ovarian Cancer: A Pooled Analysis of Case-Control Studies, 155 AM. J. EPIDEMIOLOGY 217 (2002).CrossRefGoogle ScholarPubMed
5 Helmerhorst, Frans M. et al., Perinatal Outcome of Singletons and Twins After Assisted Conception: A Systematic Review of Controlled Studies, 328 BRITISH MED. J. 261 (2004)CrossRefGoogle ScholarPubMed, at http://www.bmj.com.
6 Kovalesvsky, George et al., Do Assisted Reproductive Technologies Cause Adverse Fetal Outcomes?, 79 FERTILITY & STERILITY 1270, 1272 (2003)CrossRefGoogle Scholar (discussing the Stromberg study on children and cerebral palsy).
7 Cox, Gerald et al., Intracytoplasmic Sperm Injection May Increase the Risk of Imprinting Defects, 71 AM. J. HUM. GENETICS 162 (2002)CrossRefGoogle ScholarPubMed; Schultz, Richard M. & Williams, Carmen J., The Science of ART, 296 SCIENCE 2188 (2002).CrossRefGoogle Scholar
8 See Kovalesvsky et al., supra note 6, at 1270.
9 The President's Council on Bioethics has called for a federally funded prospective study to track the health of all babies born by in vitro fertilization and other techniques. Rick Weiss, Bioethics Panel Calls for Ban on Radical Reproductive Procedures, WASH. POST, Jan. 16, 2003, at A02.
10 See PRESIDENT's COUNCIL ON BIOETHICS, REPRODUCTION AND RESPONSIBILITY: THE REGULATION OF NEW BIOTECHNOLOGIES ch. 2, at http://www.bioethics.gov/reports/reproductionandresponsibility/chapter2.html (Mar. 2004) [hereinafter REPRODUCTION AND RESPONSIBILITY].
11 Jain, Tarun et al., Trends in Embryo-Transfer Practice and in Outcomes of the Use of Assisted Reproductive Technology in the United States, 350 NEW ENG. J. MED. 1639, 1644 fig. 1 (2004).CrossRefGoogle ScholarPubMed
12 See generally Centers for Disease Control, Contribution of Assisted Reproductive Technology and Ovulation-Inducing Drugs to Triplet and Higher-Order Multiple Births—United States, 1980-1997, MORBIDITY & MORTALITY WEEKLY REP., June 23, 2000, at 535, available at http://www.cdc.gov/mmwr/preview/mmwrhtml/mm4924a4.htm.
13 See REPRODUCTION AND RESPONSIBILITY, supra note 10.
14 See id.; Strong, Carson, Too Many Twins, Triplets, Quadruplets, and So On: A Call for New Priorities, 31 J.L. MED. & ETHICS 272 (2003).CrossRefGoogle Scholar
15 Criticism of parents who take such risks surfaced in the public condemnation of Bree Walker-Lampley, a television journalist in California with an inheritable condition in which bones of the hands and feet fuse, who had another child with this condition. Steven A. Holmes, Radio Talk About TV Anchor's Disability Stirs Ire in Los Angeles, N.Y. TIMES, Aug. 23, 1991, at B18. See also Jay Mathews, The Debate Over Her Deformity: Some People Think She Shouldn't Have Kids, WASH. POST, Oct. 20, 1991, at F1. Dan Brock has also argued that parents at risk for offspring with genetic disease do wrong in not screening prospective children to avoid giving birth to a child with handicaps. See Brock, Dan W., The Non-Identity Problem and Genetic Harms—The Case of Wrongful Handicaps, 9 BIOETHICS 269, 272-73 (1995)CrossRefGoogle Scholar. See also Shiffrin, Seana Valentine, Wrongful Life, Procreative Responsibility, and the Significance of Harm, 5 LEGAL THEORY 117 (1999).CrossRefGoogle Scholar
16 The physical risks to offspring of low birth weight and related conditions may also arise from women with uncontrolled diabetes or hypertension, whether they reproduce coitally or with ARTs.
17 Santosky v. Kramer, 455 U.S. 745 (1982).
18 Questions of the child-rearing ability of persons with disabilities have also arisen in child custody decisions in which state child protection authorities have sought to remove children from parents because of allegations that their disability makes them inadequate child-rearers, thus harming the child. See Stein, Michael Ashley, Book Review, Mommy Has a Blue Wheelchair: Recognizing the Parental Rights of Individuals with Disabilities, 60 BROOK. L. REV. 1069, 1069-70 (1994).Google Scholar
19 HUMAN FERTILISATION AND EMBRYOLOGY AUTHORITY, SEX SELECTION: OPTIONS FOR REGULATION 10, at http://www.hfea.gov.uk/AboutHFEA/Consultations (2003).
20 NATIONAL ACADEMY OF SCIENCES, SCIENTIFIC AND MEDICAL ASPECTS OF HUMAN REPRODUCTIVE CLONING 41 (2002), available at http://www.nap.edu/books/0309076374/html. Cohen, Daniel Mark, Cloning and the Constitution, Cloning and the Constitution, Cloning and the Constitution, Cloning and …, 26 NOVA L. REV. 511, 524-25 (2002)Google Scholar (discussing likelihood that cloned children will die young or suffer from physical abnormalities).
21 See Dresser, Rebecca, Genetic Modification of Preimplantation Embryos: Toward Adequate Human Research Policies, 82 MILBANK QUARTERLY 195 (2004)CrossRefGoogle ScholarPubMed [hereinafter Dresser, Genetic Modification]; Rebecca S. Dresser, Futile Science? Designer Babies as a Research Aim, AM. J. BIOETHICS (forthcoming 2004) (on file with author); Rebecca S. Dresser, Designing Babies: Research Ethics Issues, IRB (forthcoming 2004) (on file with author) [hereinafter Dresser, Designing Babies]. Similar risks could arise from efforts to have children after nuclear transfer, gene alteration, or embryo fusion.
22 See Katz, Katheryn D., Snowflake Adoptions and Orphan Embryos: The Legal Implications of Embryo Donation, 18 WIS. WOMEN's L.J. 179 (2003)Google ScholarPubMed (discussing persons and groups that would desire a ban on all uses of ART). See also John A. Robertson, Protecting Embryos and Burdening Women and Infertile Couples: Assisted Reproduction in Italy, 19 HUM. REPROD. (forthcoming 2004) (on file with author) (discussing ban on sperm, egg, and embryo donation in Italy and Germany).
23 For example, the United Kingdom's Human Fertilisation and Embryology Act is explicit that treatment services should be withheld “unless account has been taken of the welfare of any child who may be born as a result of treatment.” Human Fertilisation and Embryology Act ch. 37, § 13(5) (1990) (Eng.), reprinted in DEREK MORGAN & ROBERT G. LEE, BLACKSTONE's GUIDE TO THE HUMAN FERTILISATION & EMBRYOLOGY ACT 1990: ABORTION & EMBRYO RESEARCH, THE NEW LAW 194 (1991). Similarly, the United Nations Convention on the Rights of Children states that “In all actions concerning children … the best interests of the child shall be a primary consideration.” G.A. Res. A/RES/S-27-2, U.N. GAOR, 27th Spec. Sess., Supp. No. 19, at 5, U.N. Doc. A/S-27/19, available at http://www.unicef.org/crc/crc.htm.
24 While sometimes the “harm” is a result of the ART procedure itself, in other cases the “harm” arises from incompetent child-rearers or novel forms of family. In those cases, the “harm” could also be avoided if child-rearing rights and duties were transferred by adoption or other mechanism to more competent rearers. But most persons who use ARTs have no intention of giving up their children for adoption or having others share child-rearing. For practical purposes they may be viewed as posing risks that cannot be alleviated other than by not reproducing.
25 I exclude the rare cases of truly wrongful life, in which every postpartum moment is excruciatingly painful. In such a case, one would have a moral obligation to end that child's life. Professor Heyd would partly agree. He maintains that moral duties are owed only to “actual individuals.” Therefore, no duty is owed to a fetus and a wrong is only committed after the child is born and no effort is made to end its pain-ridden existence. DAVID HEYD, GENETHICS: MORAL ISSUES IN THE CREATION OF PEOPLE 61 (1992).
26 This is Derek Parfit's non-identity problem. PARFIT, supra note 2, at ch. 16. See JOEL FEINBERG, THE MORAL LIMITS OF THE CRIMINAL LAW: HARM TO OTHERS ch. 1 (1984) (defining the principle of harm and describing how legal wrongs impact a person's ability to engage in his or her most treasured interests, such as life). But see Shiffrin, supra note 15.
27 See HEYD, supra note 25, at 59-62.
28 Derek Parfit's example of the woman who could wait one month to conceive to avoid the birth of a child with a defect captures this sense perfectly. Derek Parfit, On Doing the Best for Our Children, in ETHICS AND POPULATION (M.D. Bayles, ed. 1976).
29 See Coleman, Carl H., Conceiving Harm: Disability Discrimination in Assisted Reproductive Technologies, 50 U.C.L.A. L. REV. 17, 56 (2002)Google ScholarPubMed (preventing a birth even where the child would not consider his or her life a net disadvantage is justifiable when the life would be filled with “gratuitous suffering” or “suffering that is unnecessary in light of the alternatives available for achieving the patient's parenting goals”). Green, Ronald M., Parental Autonomy and the Obligation Not to Harm One's Child Genetically, 25 J.L. MED. & ETHICS 5, 10-11 (1997)CrossRefGoogle Scholar (claiming that “parents have an obligation not to bring a child into being knowingly, deliberately, or negligently with a condition likely to cause significantly greater disability or suffering than others in its birth”).
30 One such approach is to recognize both a harm and a wrong to the child only if it does not have a minimally decent life approach. See Bonnie Steinbock & Ron McClamrock, When is Birth Unfair to the Child, HASTINGS CENTER REP., Nov./Dec. 1994, at 15. Depending on how that concept is interpreted, there may be very few cases of non-wrongful life that do not meet that standard.
31 In few cases will the risk of harm be so great that one can reasonably say that this child would have been better off not existing at all or that the risk of harm is so great that parents cannot be seeking standard reproductive goals in using them. Being reared by incompetent or abusive parents or having a genetic or infectious disease is unlikely to be so clearly harmful to the child that it would be better not to exist at all. In addition, situations that ex ante look quite undesirable may work out much better in practice. Only in the most extreme case of unremitting pain would death then be preferable, and those cases are not encompassed in the ART procedures under discussion. See supra notes 15, 24-26.
32 Melinda A. Roberts, Supernumerary Pregnancies, the Harm Issue and the Limits of Constitutional Privacy, in ETHICAL ISSUES IN THE TWENTY-FIRST CENTURY (F. Adams ed., forthcoming 2004) (on file with author).
33 Another example would be reproductive cloning in which the life of several clones created at the same time is diminished by the existence of the others. Even if the life of each would be acceptable to them, each could have been born with a higher quality of life if fewer had been born. See Roberts, Melinda A., Cloning and Harming: Children, Future Persons, and the “Best Interest” Test, 13 NOTRE DAME J.L. ETHICS & PUB. POL’Y 37, 56-59 (1999).Google ScholarPubMed
34 PARFIT, supra note 2, at 360.
35 Id. Parfit also calls this principle “The Same Number Quality Claim.” Id. See also Kavka, Gregory S., The Paradox of Future Individuals, 11 PHIL. & PUB. AFF. 93, 105 n.24. (1982), available at http://www.jstor.org/journals/00483915.html.Google Scholar Kavka's argument that the moral right to have children justifies slaves having offspring even if they would be born into slavery and never escape it is very close to the position that I argue for here.
36 Peters, Philip G. Jr., Protecting the Unconceived: Nonexistence, Avoidability, and Reproductive Technology, 31 ARIZ. L. REV. 487, 510-14 (1989)Google ScholarPubMed; Brock, supra note 15, at 272-73.
37 Brock, supra note 15, at 273. See also discussion in ALLEN BUCHANAN ET AL., FROM CHANCE TO CHOICE: GENETICS AND JUSTICE ch. 6 (2000).
38 Brock, supra note 15, at 273; BUCHANAN ET AL., supra note 37, at ch. 6. Although the harm is not tied to a particular individual, it does arise from the effect of the reproductive action on individuals and not in some disembodied form. Brock, supra note 15, at 273.
39 One can articulate the point in terms of switching members of a class while keeping the number in the class constant. Under this approach, the world is better off if a class of 100 persons who are healthy are born rather than a class of 100 persons, 99 of whom are healthy and one who has a disability.
40 See Brock, supra note 15, at 273; PARFIT, supra note 2, at ch. 16.
41 See Parfit, supra note 28, at 100-01.
42 A harder problem arises when the person has no guarantee that if they wait one month they will still be able to have a child or they have some other good reason for proceeding immediately.
43 Brock, supra note 15, at 272.
44 Id. at 275.
45 Depending on how that preference is weighted, it would also appear to exempt a person who would reproduce only if he or she could use the genetic enhancement or diminishment technique in question.
46 The same issue would arise with a deaf couple who screens embryos prior to transfer. Rather than transfer those with normal hearing, they choose to transfer only those who have genetic mutations connected with loss of hearing. In this case, presumably hearing instead of deaf children could have been born if the parents wished to rear a hearing child. Resolution of the case will thus turn on whether the deaf parents had a good reason for preferring a deaf child even when they could have a hearing child.
47 Brock, supra note 15, at 272; PARFIT, supra note 2, at 360-66.
48 Brock, supra note 15, at 275; PARFIT, supra note 2, at 370-71.
49 PARFIT, supra note 2, at 365, 387-90, 487-90.
50 Recall Justice Jackson's point in Railroad Express Agency, Inc. v. New York, 336 U.S. 106, 112 (1949) (Jackson, J., concurring) about the power of equal protection constraints in disciplining the power of law-makers: “[T]here is no more effective practical guaranty against arbitrary and unreasonable government than to require that the principles of law which officials would impose upon a minority must be imposed generally.”
51 The objection, however, appears to be not the offense per se that others have so acted, but rather the fact that children with disabilities have been born when it would have been relatively easy to have healthier, albeit different, children either through their own reproduction, adoption, or use of donor gametes. As such, the offense argument is a version of the same-numbers substitution argument discussed supra.
52 Indeed, this approach might provide the principle X that Parfit seeks. PARFIT, supra note 2, at 361-71, 405. But it is no longer a utilitarian principle, and looks to the internal logic of why reproduction is so highly valued to distinguish cases.
53 For a preview of that discussion, consider the case of a man who donates sperm without revealing his HIV status or hepatitis infections, leading to the infection of several children. (The example is inspired by Associated Press, Diseased Sperm Forces Fertility Clinic to Close, ST. LOUIS POST-DISPATCH, Nov. 30 1997, at A5). If the donor had disclosed those infections, children would not have been infected but also would not have been born. In this case, the donor's non-disclosure harmed recipients of the donation who were unaware of his condition, so there is an independent basis in harm to others to limit such donations. But if the harm to recipients were missing and the same-numbers proviso does not hold, he still may have no right to donate infected sperm. Donating sperm does not implicate the usual goods sought through procreation because the donor will not rear the child. Because the infected donor is not exercising procreative liberty, a much weaker basis for intervention or policy restriction would suffice. See infra notes 61-68 and accompanying text.
54 See, e.g., Berman v. Allan, 404 A.2d 8 (N.J. 1979); Becker v. Schwartz, 386 N.E.2d 807 (N.Y. 1978); Smith v. Cote, 513 A.2d 341 (N.H. 1986); Enright v. Kwun, 100 L.S.G. 32, [2003] E.W.H.C. 1000, 2003 WL 21047364 (Q.B. 2003) (Eng.); Rand v. East Dorset Health Authority, 56 B.M.L.R. 39, [2000] Lloyd's Rep. Med. 181, 2000 WL 774894 (Q.B. 2000) (Eng.).
55 The California, New Jersey, and Washington Supreme Courts have allowed children to recover special but not general damages on a claim of wrongful life in situations in which their parents were able to recover both special and general damages for the child's birth. See Turpin v. Sortini, 643 P.2d 954, 966 (Cal. 1982); Procanik v. Cillo, 478 A.2d 755, 763-64 (N.J. 1984); Harbeson v. Parke-Davis, Inc., 656 P.2d 483, 496-97 (Wash. 1983). These cases are less a recognition of wrongful life than they are a means to assure that the tortfeasor internalizes the full cost of the tort when legal duties of parental care end at majority.
56 Époux X v. Mutuelle d’Assurance du Corps Sanitaire Français, Cass. ass. plén., Nov. 17, 2000, J.C.P. 2000, II, 10438 (Fr.).
57 Id.
58 The locus classicus is Justice Weintraub's statement in Gleitman v. Cosgrove, 227 A.2d 689, 707-12 (N.J. 1967).
59 See, e.g., Smith, 513 A.2d at 341.
60 See, e.g. id. The case is different if the parents have done something affecting the child's present condition which could have been avoided and yet the child be born, such as refraining from using drugs or alcohol in a pregnancy going to term. However, once the action affecting offspring occurs it is no longer avoidable except by terminating the pregnancy to prevent the birth of the affected child.
61 The right of prison inmates to reproduce, however, may be limited on lesser grounds because of security and other requirements of their confinement. See Gerber v. Hickman, 291 F.3d 617 (9th Cir. 2002) (en banc) (prison inmate has no right to provide sperm to his wife for artificial insemination outside the prison); see also Goodwin v. Turner, 908 F.2d 1395 (8th Cir. 1990). JOHN A. ROBERTSON, CHILDREN OF CHOICE: FREEDOM AND THE NEW REPRODUCTIVE TECHNOLOGIES 35-38 (1994). Judges have also on occasion required persons who have failed to pay child support or had previous children placed in foster care at public expense to refrain from having additional children as a condition of probation or on pain of contempt. See Associated Press, Judge Orders Couple Not to Have Children, CNN.COM (four previous children tested positive for cocaine and placed in foster care), at http://www.cnn.com/2004/LAW/05/08/conception.banned.ap/index.html (May 8, 2004); Robert E. Pierre, In Ohio, Supreme Court Considers Right to Procreate, WASH. POST, May 11, 2004, at A02 (father of seven children with five women who owes $40,000 in child support ordered to use “reasonable efforts” to avoid impregnating anyone for five years). Whether such orders are constitutionally valid has not yet been definitively resolved.
62 See Buck v. Bell, 274 U.S. 200 (1927); Skinner v. Oklahoma, 316 U.S. 535 (1942). Previously, most discussions of the liberty to have offspring involved questions of limiting the number of children to prevent over-population or parental fitness licensing schemes.
63 Although regulation of sexual intercourse is much more difficult than regulation of procedures provided by licensed professionals, it does not follow that the state should be able to regulate ARTs on moral or speculative grounds that would not justify restriction of coital reproduction.
64 However, some limits on provider discretion to refuse services may come from the federal Americans with Disabilities Act, which applies to private ART clinics and prohibits denying persons access to infertility services because of their disability. 42 U.S.C. § 12181(7)(F) (2000). For further discussion of the Americans with Disabilities Act, see infra notes 72-78 and accompanying text.
65 See Skinner, 316 U.S. at 541.
66 Those goods may be thought of as an internal constraint on rights. David Archard develops a similar idea when he argues that the willingness to have a child that is not likely to meet a threshold of a decent chance of a happy life, violates an internal constraint on procreative liberty and thus does not fall within the right. See David Archard, Artificial Reproduction and the Interests of the Child, Presentation at the Procreative Liberty Conference, Medical Center of the University of Giessen, Germany (June 13-14, 2003) (on file with author). For Archard an internal constraint is “a full and adequate specification of what the right in question contains or immediately entails.” Id. By contrast, “an external constraint are contingent facts that arise from its exercise, such as effects on others.” Id. I would disagree that having such a child violates such internal constraints if the parents were still willing to nurture and rear the child, preferably with their own resources. For further discussion, see infra notes 67-68 and accompanying text.
67 Onora O’Neill makes a similar point about the internal logic of procreative liberty when she argues that “the right to beget or rear is not unrestricted, but contingent on begetters and bearers having some feasible plan for their child to be adequately reared by themselves or willing others. Persons who bear or beget without making any such plans cannot claim that they are exercising a right.” Archard, supra note 66. I would agree that persons who procreate without such a plan may not be exercising the right to procreate because they have not met the internal constraint of seeking the usual reproductive goals of genetic transmission and the rearing and companionship of offspring.
68 Although not harming the child, the person reproducing in such circumstances may be harming other interests, such as a collective or communal interest in a certain moral tone. Appeals to such an interest would not justify constraining choices that are clearly reproductive.
69 Timothy Murphy, Gay and Lesbian Health Care as Politics/Ethics, APA NEWSLETTERS (Spring 1999), at http://www.apa.udel.edu/apa/archive/newsletters/v98n2/medicine/murphy.asp (“Medical treatment should not be a reward offered in exchange for the promise of future moral behavior, with individual physicians defining the acceptable terms of a patient's future behavior. That approach would demand too much of physicians—to make moral judgments about who deserves treatment.”).
70 A strong strain of medical ethics would argue that doctors also have an obligation to care for the sick, even at some risk to themselves. When many doctors in the first years of the AIDS epidemic refused to treat persons with HIV, the American Medical Association's Council on Ethical and Judicial Affairs declared that “a physician may not ethically refuse to treat a patient whose condition is within the physician's current realm of competence solely because the patient is seropositive [for HIV].” Council on Ethical and Judicial Affairs, American Medical Association, Code of Medical Ethics: Current Opinions with Annotation, Opinion 9.131 (2002-2003). The same ethic has led many health care workers to risk their lives in the front-line battles against SARS. See Emanuel, Ezekiel J., The Lessons of SARS, 139 ANNALS INTERNAL MED. 589 (2003)CrossRefGoogle ScholarPubMed.
71 Towner, Dena & Loewy, Roberta Springer, Ethics of Preimplantation Diagnosis for a Woman Destined to Develop Early-Onset Alzheimer Disease, 287 JAMA 1038 (2002).CrossRefGoogle ScholarPubMed See also Pennings, G., The Physician as an Accessory in the Parental Project of HIV Positive People, 29 J. MED. ETHICS 321 (2003).CrossRefGoogle ScholarPubMed
72 42 U.S.C. § 12181 (2000).
73 See Bragdon v. Abbott, 107 F.3d 934 (1st Cir. 1997), aff’d 163 F.3d 87 (1st Cir. 1998).
74 See 42 U.S.C. § 12182(b)(3) (2000). See also Hubbard, Ann, Understanding and Implementing the ADA's Direct Threat Defense, 95 NW. U.L. REV. 1279 (2001).Google Scholar
75 In the employment context, the scholarly debate has focused on whether a regulatory model of civil rights discrimination or an accommodation perspective should control applications of the act, and thus the extent to which employers must incur costs to accommodate disabled workers. Most recently, Samuel R. Bagenstos has argued that both approaches are rooted in the same fundamental values of reducing subordination and social inequality. Bagenstos, Samuel R., “Rational Discrimination,” Accommodation, and the Politics of (Disability) Civil Rights, 89 VA. L. REV. 825 (2003).CrossRefGoogle Scholar For issues of employment discrimination and access to facilities in the public sector, see University of Alabama v. Garret, 531 U.S. 356 (2001) (Eleventh Amendment bars application of the ADA to state employment decisions); Lane v. Tennessee, No. 02-1667, 2004 U.S. LEXIS 3386 (May 17, 2004) (Title II of the ADA valid as protection of fundamental right of access to the courts).
76 Although not a disabilities case, U.A.W. v. Johnson Controls, 499 U.S. 187 (1991), an important gender discrimination case under Title VII of the Federal Civil Rights Act, found that employer concerns about tort suits from injured offspring were not sufficient to justify keeping women out of workplaces because of risks to resulting offspring.
77 See 42 U.S.C. § 12101 (2000).
78 It would be ironic if the very reason why an HIV patient could not be barred from a dentist's office in Bragdon v. Abbott, 107 F.3d 934 (1st Cir. 1997), aff’d, 163 F.3d 87 (1st Cir. 1998) (not reproducing because of risk to offspring) was now deemed sufficient to deny them services in the reproductive endocrinologist's office when they wished to reproduce. See Coleman, supra note 29, at 26-29, 34-39.
79 The President's Council on Bioethics has recommended a federally funded longitudinal study on the health and development impacts of ARTs on children born with their aid. See PRESIDENT's COUNCIL ON BIOETHICS, BIOTECHNOLOGY AND PUBLIC POLICY: BIOTECHNOLOGIES TOUCHING THE BEGINNINGS OF HUMAN LIFE, at http://biotech.law.lsu.edu/research/pbc/background/bppinterim.html (Jan. 2004).
80 See Kovalesvsky et al., supra note 6, at 1271 (“Of Note, many of the [major birth defects] are amenable to medical or surgical correction and do not have significant long-term sequelae.”).
81 PARFIT, supra note 2, at ch. 16.
82 Hansen, Michèle et al., The Risk of Major Birth Defects After Intracytoplasmic Sperm Injection and In Vitro Fertilization, 346 NEW ENG. J. MED. 725, 727-29 (2002)CrossRefGoogle ScholarPubMed (infants conceived with IVF/ICSI have twice as high a risk of a major birth defect as naturally conceived infants).
83 If so, the relevant question is whether those cost burdens are greater than those imposed (and tolerated) from other groups. If they are, a less restrictive alternative to prohibition would be to restrict use of those procedures to those who commit themselves to rearing and have insurance or the resources to cover the additional child-rearing costs that might result. Cases not meeting those conditions may be rare. See also Associated Press, supra note 61.
84 Roberts, supra note 32.
85 Many infertile couples, for example, prefer a multiple birth over a singleton because they think that they will more easily achieve a goal of having two children or because they like the idea of getting “two children for the price of one” ART procedure. See Ryan, Ginny L. et al., The Desire of Infertile Patients for Multiple Births, 81 FERTILITY & STERILITY 500 (2004)CrossRefGoogle ScholarPubMed; Jain et al., supra note 11, at 1641-44 (discussing single embryo transfer policies to prevent twins).
86 See Jain et al., supra note 11.
87 HUMAN FERTILISATION AND EMBRYOLOGY AUTHORITY, CODE OF PRACTICE, at http://www.hfea.gov.uk (6th ed. 2003).
88 Jain et al., supra note 11, at 1644.
89 But even if the law allowed couples and doctors to risk having twins, insurance coverage and state health programs would not be obligated to provide support for that extra effort. Nor would doctors be obligated to offer such services.
90 The competition between twins that exists in this situation is quite familiar to embryologists. Until there were better methods of choosing the embryo most likely to implant, the choice between embryos of apparent equal quality would be made randomly.
91 Similar issues arise in non-ART situations in which there is a high risk that the child will be born with serious physical harm or disease, such as prenatal drug abuse, non-compliance with prenatal medical regimes, or refusal of prenatal screening in high risk cases.
92 For example, Bree Walker, the television announcer with congenital ectrodactyly who risked having another child with that same condition was hardly imposing high costs on others. See Holmes, supra note 15. Nor would a deaf child reared by deaf parents greatly increase costs.
93 Laws requiring that they be informed of the risks that children will be born with the condition of concern would not infringe their reproductive freedom.
94 If they are willing to reproduce despite their carrier status, they cannot claim that that status prevents them from engaging in the ordinary life activity of reproduction. On the other hand, providers who do view carrier status as such an interference might be brought within the ADA because they regard carriers as having a disability.
95 See discussion infra pp. 23-24.
96 See Ethics Committee of the American Society for Reproductive Medicine, Human Immunodeficiency Virus and Infertility Treatment, 77 FERTILITY & STERILITY 218 (2002).CrossRefGoogle Scholar
97 This is similar to Parfit's example of a woman waiting a month to conceive to have a healthy child. See Parfit, supra note 28, at 100-01.
98 HIV-infected women in Africa who lack access to the antiviral therapy do not have the option of taking medications to prevent vertical transmission. Even if they do have access, there is still the risk that they will die while the child is young, thus contributing to the millions of AIDS orphans that now exist in Africa.
99 See Coleman, supra note 29, at 57-67.
100 Bragdon v. Abbott, 524 U.S. 624, 648 (1998).
101 Id. at 651, 653. The Bragdon Court actually remanded the case to the U.S. District Court for the District of Maine for further findings about whether such a threat existed. The court found none. Bragdon v. Abbott, 163 F.3d 87 (1st Cir. 1998).
102 The imposition of greater rearing costs is not a “direct threat to the health or safety of others” and thus is not appropriately considered by the provider as a reason to deny services.
103 See Chambers v. Melmed, No. 00-RB-1794 (D. Colo. Dec. 3, 2003); see also Jim Hughes, Blind Woman Sues After Clinic Suspends Fertility Treatments, DENVER POST, Nov. 7, 2003, at A01; Karen Abbott, Doctor Defends Decision to Deny Artificial Insemination, ROCKY MOUNTAIN NEWS, Nov. 13, 2003, at 22A.The case of deaf parents rearing a hearing child would be analyzed similarly. If the child would not be harmed because it would not have otherwise been born and the parents can provide competent rearing, either alone or with help, then there is no valid justification for refusing them services. For discussion of issues relating to deaf persons opting for deaf or hearing children, see Robertson, John A., Ethical Issues in New Uses of Preimplantation Genetic Diagnosis, 18 HUM. REPROD. 465 (2003).CrossRefGoogle ScholarPubMed
104 See Chambers, No. 00-RB-1794.
105 See id.
106 See id.
107 See id.
108 For an insightful analysis of this issue, see Coleman, supra note 29, at 57-67. However, Coleman would allow a greater range of discretion to refuse ARTs to patients because of unavoidable risks to offspring than I argue the ADA, properly understood, should permit. Even Coleman agrees that the “inability to care for a child would have to be truly extraordinary to justify a decision to withhold ARTs.” Id. at 61. But it is such cases which have the weakest connection to the usual goods of reproduction and thus a claim to protection under the approach advocated in this Article. Only if the person had no other way to have genetic offspring and was able to rear the child should access to ART services then be required. This provides a more focused approach to the balancing that Coleman recommends but gives no guidance in how to carry out.
109 The House of Lords faced a related question in Rees v. Darlington Memorial Hospital NHS Trust, [2003] U.K.H.L. 52 (2003) (Eng.) (blind person who was negligently sterilized entitled to a penalty payment but not to damages for unwanted birth of child).
110 PRESIDENT's COUNCIL ON BIOETHICS, BIOTECHNOLOGY AND PUBLIC POLICY: BIOTECHNOLOGIES TOUCHING THE BEGINNINGS OF HUMAN LIFE: DRAFT RECOMMENDATIONS (REVISED), at http://www.bioethics.gov/background/bppinterim.html (Jan. 15, 2004).
111 Id.
112 Id.
113 Id. Presumably they would also ban transfer of hybrid or fused embryos. The ban as stated would not extend to pronuclei transfer, to cytoplasmic transfers, or to germ line genetic engineering because the child would still result from the union of human egg and sperm. They may, however, find other reasons to object to those procedures.
114 The Raelian cult and a few disreputable scientists who have publicized their desires to produce a clone before health and safety have been established are exceptions.
115 Gina Kolata, Scientists Claim Cloning Success, N.Y. TIMES, Feb. 12, 2004, at A1; Vogel, Gretchen, Scientists Take Step Toward Therapeutic Cloning, 303 SCIENCE 937 (2004).CrossRefGoogle ScholarPubMed
116 See generally Robertson, John A., Procreative Liberty in the Era of Genomics, 29 AM. J.L. & MED. 439 (2003)CrossRefGoogle ScholarPubMed [hereinafter Robertson, Procreative Liberty]; Robertson, John A., Two Models of Human Cloning, 27 HOFSTRA L. REV. 609 (1999)Google ScholarPubMed [hereinafter Robertson, Two Models]; Robertson, John A., Liberty, Identity, and Human Cloning, 76 TEX. L. REV. 1371 (1998).Google ScholarPubMed
117 The situation would be different if the welfare of offspring were determined in part by the number of clones from one source. As Philip Peters points out, making fewer clones would protect the few who are born, even if none were harmed if more were born. See Peters, supra note 36, at 548.
118 See Robertson, Two Models, supra note 116.
119 See, e.g., Kono, Tomohiro et al., Birth of Parthenogenetic Mice That Can Develop to Adulthood, 428 NATURE 860 (2004)CrossRefGoogle Scholar; Rick Weiss, In a First, Mice are Made Without Fathers, WASH. POST, Apr. 22, 2004, at A13; Fiandaca, Sherylynn, In Vitro Fertilization and Embryos: The Need for International Guidelines, 8 ALB. L.J. SCI. & TECH. 337, 354 (1998)Google ScholarPubMed (contending that currently “animal-human hybrids are an unlikely possibility”).
120 Fiandaca, supra note 119, at 354.
121 See Giejsen, Niels et al., Derivation of Embryonic Germ Cells and Male Gametes from Embryonic Stem Cells, 427 NATURE 148 (2004)CrossRefGoogle Scholar (study in which mouse embryonic stem cells were used to create sperm).
122 If harm to them or others cannot be shown, the case for banning them must fall back on such vague and general notions as the “dignity of human procreation.” Once “dignity” is introduced as legitimate criterion for judging ARTs, however, it may be used in other cases that are more controversial.
123 See Fiandaca, supra note 119, at 354 (noting that research indicates “that animal eggs fertilized with human sperm and implanted in animals have ceased development after the first few cell divisions”).
124 See id. (explaining that animal gestation of human embryos has been successful, in part, because the human immune system rejects foreign bodies).
125 See LEE M. SILVER, REMAKING EDEN 187-90 (1997) (arguing two gay males could use the fusion method to create genetic offspring). For more analysis of the issue, see John A. Robertson, Gay and Lesbian Rights to Procreate and Access to Assisted Reproductive Technology, 55 CASE W. RES. L. REV. (forthcoming 2004) (on file with author).
126 See SILVER, supra note 125, at 236-39.
127 They might also have conscientious objections to destroying embryos. If they did, it would be odd that they would be willing to use IVF, PGD, and genetic alteration techniques to ensure the birth of a child without the disease.
128 Dresser, Genetic Modification, supra note 21.
129 Theodore Friedmann, Overcoming the Obstacles to Gene Therapy, SCI. AM., June 1997, at 96.
130 The same is true for intentional diminishment of offspring characteristics, which makes offspring worse off than they would otherwise have been in cases in which the parent asserts that they would not have reproduced unless they could have diminished those characteristics. This is the “Bladerunner Problem” discussed in JOHN A. ROBERTSON, CHILDREN OF CHOICE: FREEDOM AND THE NEW REPRODUCTIVE TECHNOLOGIES 170-71 (1994). See also Robertson, Procreative Liberty, supra note 116, at 439.
131 See Robertson, Procreative Liberty, supra note 116, at 477.
132 The conventional thinking is that parents, especially upper-middle class parents, will rush to use these methods to improve the competitive positions of their children. Due to the costs and intrusiveness of gaining this advantage and the competitive arms-race that it would engender, I am skeptical that many parents would choose to do so.
133 Dresser makes the same point by noting what full and adequate disclosure to parents should say: “do you want an invasive IVF and PGM in order to have a child who might be slightly happier, less happy or even deformed, etc.” See Dresser, Designing Babies, supra note 21.
134 For a discussion of the right to trait selection as part of procreative liberty, see Robertson, John A., Genetic Selection of Offspring Characteristics, 76 B.U. L. REV. 421 (1996).Google ScholarPubMed
135 See discussion of competitive arms-races in offspring characteristics in Robertson, Procreative Liberty, supra note 116, at 475.
136 See, e.g., Rao, Radhika, Assisted Reproductive Technology and the Threat to the Traditional Family, 47 HASTINGS L.J. 951 (1996).Google Scholar
137 See Paul C. Vitz, Family Decline: The Findings of Social Science, at http://catholiceducation.org/articles/marriage/mf0002.html (1999).
138 See McEwen, Angie Godwin, So You’re Having Another Woman's Baby: Economics and Exploitation in Gestational Surrogacy, 32 VAND. J. TRANSNAT’L L. 271, 281-83 (1999).Google Scholar
139 Society for Assisted Reproductive Technology and the American Society for Reproductive Medicine, Assisted Reproductive Technology in the United States: 1999 Results Generated from the American Society for Reproductive Technology/Society for Assisted Reproductive Technology Registry, 78 FERTILITY & STERILITY 918, 925 (2002).Google Scholar
140 Tomlinson, Matt J. & Pacey, Allan A., Practical Aspects of Sperm Banking for Cancer Patients, 6 HUM. FERTILITY 100 (2003).CrossRefGoogle ScholarPubMed
141 A notable example is cyclist Lance Armstrong fathering twins with frozen sperm after successful treatment of his testicular cancer. See LANCE ARMSTRONG, IT's NOT ABOUT THE BIKE (2000).
142 Often they will remarry.
143 See, e.g., Woodward v. Comm’r of Soc. Sec., 760 N.E.2d 257, 259 (Mass. 2001).
144 See Merle Spriggs & Taryn Charles, Should HIV Discordant Couples Have Access to Assisted Reproductive Technologies?, J. MED. ETHICS ONLINE (Sept. 2002), at http://jme.bmjjournals.com/cgi/data/28/1/DC1/13 (stating that one ethical concern when considering ART for HIV infected couples is the potential for the child to be disadvantaged by the reduced life expectancy of the infected person).
145 See American Civil Liberties Union, ACLU Fact Sheet: Overview of Lesbian and Gay Parenting, Adopting and Foster Care, at http://www.aclu.org/issues/gay/parent.html (Apr. 6, 1999) (stating that “at least 21 states have granted second-parent adoptions to lesbain and gay couples”).
146 One article reports that there are 96,000 lesbian couples and 60,000 gay male couples now rearing children. Ginia Bellafante, Two Fathers, With One Happy to Stay at Home, N.Y. TIMES, Jan. 12, 2004, at A1. Most of these cases have resulted from adoption, but many of them are the results of intrauterine insemination, egg donation, or surrogacy.
147 Goodridge v. Dep't of Pub. Health, 798 N.E.2d 941, 978 (Mass. 2003) (Sosman, J., dissenting) (rejecting court's holding that a ban on gay marriage violates due process and equal protection provisions of state constitution).
148 See id. at 962-64 (“[T]he department [of public health] readily concedes that people in same-sex couples may be “excellent” parents. These couples (including four of the plaintiff couples) have children for the reasons others do—to love them, to care for them, to nurture them. But the task of child rearing for same-sex couples is made infinitely harder by their status as outliers to the marriage laws.”).
149 For a discussion of whether straight or gay parents could use embryo screening or genetic alteration to control a child's genetic predisposition to homosexuality, see Robertson, John A., Extending Preimplantation Genetic Diagnosis: Medical and Non-Medical Uses, 29 J. MED. ETHICS 213 (2003).CrossRefGoogle ScholarPubMed
150 See, e.g., Huddleston v. Infertility Ctr. of Am., 200 A.2d 453 (Pa. 1997) (involving a single male who became a parent in this way who then murdered the child because it cried so much).
151 In re Marriage of Buzzanca, 72 Cal. Rptr. 2d 280 (1998) (involving a couple who initiated the arrangement was found responsible for rearing the resulting child).
152 Because the state may have the constitutional power to ban the procedure, however, does not mean that it should do so.
153 See REPRODUCTION AND RESPONSIBILITY, supra note 10.
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