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implantation.32 This leaves the couple facing the choice of either bringing a fetus to term that will have inherited a genetic disease or aborting the fetus before it is viable.33 PGD provides an alternative approach.34 After the egg is fertilized and has developed into an embryo consisting of anywhere between six to ten cells, one of the cells is extracted and tested for defective genes or chromosomal abnormalities.35 This procedure is conducted on all of the embryos created from IVF so that a determination can be made as to which ones are free of genetic defects and can be implanted into the uterus.36 However, the use of PGD is not limited to screening for genetic diseases. The procedure’s potential is such that it could conceivably be utilized for non-therapeutic purposes such as screening for gender, hair color, or any other number of inheritable conditions.37 A couple or a person armed with detailed knowledge of an embryo’s genetic makeup can use that information to select either for or against a particular embryo’s genetic features, choosing whether or not to implant an embryo during the IVF process depending on the results of testing.
Bratislav Stankovic, “It’s a Designer Baby!”—Opinions on Regulation of Preimplantation Genetic Diagnosis, 2005 UCLA J.L. & TECH. 1, 2-3 (2005), available at http://www.lawtechjournal.com/articles/2005/03_050713_stankovic.pdf.
See Patrik S. Florencio, Genetics, Parenting, and Children’s Rights in the Twenty-First Century, 45 MCGILL L.J. 527, 529-31 (2000).
genetic condition every day.39 Although human genetic engineering remains science fiction at present40 and most efforts to conduct gene therapy have so far failed,41 there is still speculation that at some point in the not-too-distant future, scientists will be able to alter the genetic makeup of both embryos and adult individuals.42 The ability to control the genetic makeup of our children using PGD and selective implantation raises a host of questions for which there are no firm answers yet. To what extent should prospective parents have access to information regarding an embryo’s genetic makeup? Should parents be allowed to select for or against certain non-disease characteristics in their children, even if the result is a deliberately disabled child? Is “intentional diminishment,” the deliberate selection for disability,43 in the best interests of the children? Is there the possibility of harm to society as a whole if these procedures become widespread and routine? Do we have a right to autonomy in our genetic future even before we come into existence? Or to summarize these questions, do parents have the right to use ART to create the “perfect” child and, by implication, the “imperfect” child that suits their particular desires? If they do have such a right, to what extent and See, e.g., Genomics.energy.gov, Human Genome Project Information: History of the Human Genome Project, http://www.ornl.gov/sci/techresources/Human_Genome/project/hgp.shtml (last visited Jan. 16, 2009).
See, e.g., BLADE RUNNER (Warner Bros. Studios 1982); AKIRA (Toho Comp. Ltd. 1988).
See, e.g., Sheryl G. Stolberg, Scientists Defend Suspended Gene Therapy, N.Y. TIMES, Feb. 15, 2000, available at http://query.nytimes.com/gst/fullpage.html?res=9C04E7D81431F936A25751C0A9669C8B63&sec=&spon =&pagewanted=print. But see Deena Beasley & Ben Hirschler, Gene Therapy Improves Sight in NearBlind Patients, REUTERS, Apr. 27, 2008, http://www.reuters.com/article/healthNews/idUSN2739550520080427?sp=true (“Gene therapy for a rare type of inherited blindness has improved the vision of four patients who tried it, boosting hopes for the troubled field of gene repair technology....”).
See MARK S. FRANKEL & AUDREY R. CHAPMAN, HUMAN INHERITABLE GENETIC MODIFICATIONS:
ASSESSING SCIENTIFIC, ETHICAL, RELIGIOUS AND POLICY ISSUES (2000), available at http://www.aaas.org/spp/sfrl/projects/germline/report.pdf.
Dana Ziker, Comment, Appropriate Aims: Setting Boundaries for Reprogenetic Technology, 2002 DUKE L. & TECH. REV. 0011, 9 (2002), available at http://www.law.duke.edu/journals/dltr/articles/pdf/2002DLTR0011.pdf.
by what means can it be proscribed, if at all? This Article argues that ART have developed in an era of lax regulation and that greater regulation of these technologies and their possibilities is necessary to prevent harm to the children that will be born of these processes.44 It surveys a variety of arguments both for and against regulation of intentional diminishment and provides examples of the means by which regulation can be accomplished.45
At present, there is no federal legislation that proscribes the use of PGD in general, including the use of PGD to screen for both positive and negative inheritable characteristics.46 A minority of states regulate the use of human embryos for research.47 Only some states have enacted legislation that loosely regulates PGD,48 and none of them proscribes the use of PGD to select for genetic characteristics.49 While in the United States major legal battles have been waged over the issue of abortion,50 there has been little public debate over issues related to assisted reproduction, and the federal and states governments have adopted a largely hands-off approach.51 Consequently, an understanding of the moral and legal issues surrounding ART, and PGD in particular, See infra Part II.A.
See infra Parts II.B, III.
Stankovic, supra note 37, at 5.
Michelle A. Groman, Note, Regulating Preimplantation Genetic Diagnosis: The Pathologization Problem, 118 HARV. L. REV. 2770, 2773 (2005).
See Brooke McConnell, Quality Control: The Implications of Negative Genetic Selection and Pre-Birth Genetic Enhancement, 15 UCLA WOMEN’S L.J. 47, 54-58 (2006).
See John A. Robertson, Procreative Liberty in the Era of Genomics, 29 AM. J. L. & MED. 439, 482-84 (2003).
must begin with an understanding of the right to procreate and to parent under the U.S.
Constitution and what effect U.S. Supreme Court holdings in this regard have on any prospective regulation of PGD.
The jurisprudence of procreation consists of two often intermingling strains of U.S. Supreme Court holdings: the first involves the right to procreate and rear children and the second involves the right to avoid reproduction.52 A general right to privacy was first advocated by Louis Brandeis and Samuel Warren in an 1890 law-review article entitled The Right to Privacy,53 but the right was not articulated by the Court until seventy-five years later in Griswold v. Connecticut, a case challenging the authority of the state to proscribe contraception for married couples.54 The Court relied on previous case law to hold that a number of unstated protections emanated from the Bill of Rights that fell under the “penumbra” of a general right to privacy that protected the marital relationship.55 The Court extended this general right of privacy to protect the contraception choices of unmarried persons in Eisenstadt v. Baird56 and of minors in Carey v. Population Services International.57 The Court further extended the right to privacy in the procreative sphere in Roe v. Wade, holding that the right protected the freedom of women to obtain an abortion at the pre-viability stage of the pregnancy.58 The Court refined its treatment of the issue in Planned Parenthood v. Casey by crafting a McConnell, supra note 49, at 58.
Samuel Warren & Louis Brandeis, The Right to Privacy, 4 HARV. L. REV. 193 (1890).
381 U.S. 479, 486 (1965).
test that struck down statutes that placed an undue burden on a woman’s right to obtain an abortion.59 As the Court has expanded its holdings to provide greater protection of the right to terminate a pregnancy, so has the Court recognized a right to procreate and rear children as the parents see fit.60 In Meyer v. Nebraska, the Court struck down a statute that prohibited teaching German to young students, finding that it violated the Due Process Clause of the Constitution and stating in dicta that to deprive parents of the decision over what their children may be taught in schools was depriving them of a liberty interest.61 In Skinner v. Oklahoma, the Court struck down a statute that mandated the sterilization of habitual criminals, and it stated that the ability to procreate is “one of the basic civil rights of man.”62 And in a 1972 case, Stanley v. Illinois, the Court struck down a statute that presumed the parental unfitness of unwed fathers in a custody action, holding that the presumption violated the Equal Protection Clause.63 From these holdings, it is possible to surmise that the Court treats issues regarding child bearing (including the right not to have children) and child rearing with great sensitivity and will carefully review statutes that infringe on either of those rights.
Nonetheless, states do have a substantial interest in family matters, and every state has drafted numerous laws as part of their inherent authority to regulate the family.64 Such authority even extends into the delicate relationship between the mother and father of a 505 U.S. 833, 877 (1992).
See Stanley v. Illinois, 405 U.S. 645 (1972); Skinner v. Oklahoma, 316 U.S. 535 (1942); Meyer v.
Nebraska, 262 U.S. 390 (1923).
Meyer, 262 U.S. at 399, 402.
Skinner, 316 U.S. at 541.
Stanley, 405 U.S. at 658.
See White v. Chambliss, 112 F.3d 731, 735 (4th Cir. 1997) (“The parent’s right to custody is subject to the child’s interest in his personal health and safety and the state’s interest as parens patriae in protecting that interest.” (citing Jordan v. Jackson, 15 F.3d 333, 346 (4th Cir. 1994))); Vivian Hamilton, Principles of U.S. Family Law, 75 FORDHAM L. REV. 31, 63-64 (2006).
child upon divorce,65 and it is premised on the desire to protect a child’s best interests.66 States may also intervene to limit the ability of parents to refuse medical treatment for their children as well as to restrict the parents’ access to “inappropriate treatment” on behalf of their children.67 At present, no court has ruled on whether a parent has a right to choose the traits of their children,68 and the extent of parental authority in this field remains an open question. Clearly though, any effort to regulate the use of PGD to select for inheritable traits steps into a background already well trodden by the state legislatures and the judiciary.
B. The Implications of Preimplantation Genetic Diagnosis and Intentional Diminishment: Arguments for and Against Strict Regulation There are many contrary views about the propriety of using PGD to select for genetic characteristics and to what extent PGD should be regulated or restricted as a result, especially where the prospective parents deliberately select for characteristics that will produce a disabled child. There are those who adopt a view that PGD should be strictly regulated and such a use should be illegal, and there are those who adopt a more libertarian position and argue that there should be little to no restriction of the procedure.69 At the heart of many of these arguments lies the right to procreate, a right that opponents of regulation argue also protects the manner of procreation.70 They argue that See Helen M. Alvaré, The Case for Regulating Collaborate Reproduction: A Children’s Rights Perspective, 40 HARV. J. ON LEGIS. 1, 49 (2003).
See Loretta M. Kopelman, The Best Interests Standard for Incompetent or Incapacitated Persons of All Ages, 35 J.L. MED. & ETHICS 187, 187-88 (2007).
Florencio, supra note 38, at 546.
Lindsey A. Vacco, Comment, Preimplantation Genetic Diagnosis: From Preventing Genetic Disease to Customizing Children. Can the Technology Be Regulated Based on the Parents’ Intent?, 49 ST. LOUIS U.
L.J. 1181, 1216-17 (2005) (citation omitted).
Robertson, supra note 51, at 442-44.
See id. at 462, 467-68.
just as the state may not proscribe when individuals can conceive children, it also cannot proscribe the means by which prospective parents choose to conceive, especially when those means are necessary to conceive at all.71 Those in favor of regulation argue that the procreative right is not an unlimited right and that there are several compelling rationales for limiting the use of PGD to select for disability.72 Arguments by many commentators for the regulation of PGD to prevent the selection of disabling traits begin by considering the personal autonomy of the child that will be born with the disabling condition.73 Professor Helen Alvaré has noted the prevalence of the attitude among prospective parents utilizing ART that because they are paying considerable sums of money to acquire a child, they should be entitled to exactly the kind of child that they want.74 Of course, all parents seek to control the upbringing, characteristics, and attitudes of their children to some extent. However, parents who conceive by “natural” means have little to no control of how their paired DNA will express itself in their children in either physical or behavioral characteristics, and they must be content to guide and direct their children by virtue of their role as teachers combined with their ability to influence or control their child’s choices. In contrast, individuals who must utilize ART to conceive a child and elect to use PGD to screen for the genetic condition of the embryo are limited only by how much genetic information about the embryo they desire to seek, what they elect to do with that information, and by
See Vacco, supra note 68, at 1218-25; see also Alvaré, supra note 65; Florencio, supra note 38.
Alvaré, supra note 65, at 59; K.W. Antsey, Are Attempts To Have Impaired Children Justifiable?, 28 J.