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WRONGFUL SELECTION: ASSISTED REPRODUCTIVE
TECHNOLOGIES, INTENTIONAL DIMINISHMENT, AND THE
ALEXANDER D. WOLFE∗
TABLE OF CONTENTS
A. The Landscape of Reproductive Issues
B. A Survey of In-Vitro Fertilization and Preimplantation Genetic Diagnosis
II. THE MORAL, ETHICAL, AND LEGAL ISSUES SURROUNDING THE USE OF
PREIMPLANTATION GENETIC DIAGNOSIS TO SELECT FOR GENETICCHARACTERISTICS
A. The Legal Background
B. The Implications of Preimplantation Genetic Diagnosis and Intentional Diminishment: Arguments For and Against Strict Regulation
III. OPTIONS TOWARD REGULATING THE USE OF PREIMPLANTATION GENETICDIAGNOSIS TO INTENTIONALLY CREATE DISABLED CHILDREN
A. Federal Regulation
B. State Legislation
C. Methods of Regulation Not Involving State Intervention
The author attended Catholic University’s Columbus School of Law from 2004 to 2005 and graduated ∗ from the Texas Wesleyan School of Law in 2007.
Document hosted at http://www.jdsupra.com/post/documentViewer.aspx?fid=5c86444b-0507-409d-96c5-36818102f8d1 I. Introduction [I]n the realm of bioethics, the evils we face (if indeed they are evils) are intertwined with the goods we so keenly seek: cures for disease, relief of suffering, preservation of life. Distinguishing good and bad thus intermixed is often extremely difficult.1
The science of reproduction has advanced dramatically in the last several decades.
Whereas in the past, couples experiencing difficulty producing children of their own had little or no recourse beyond adoption, couples today enjoy an array of choices thanks to various assisted-reproductive technologies (ART), from injections or pills designed to stimulate the body’s own reproductive capabilities,2 to the use of in-vitro fertilization (IVF) techniques to produce viable embryos outside of the body for implantation into the mother,3 to the use of a surrogate mother to carry an embryo,4 or to the use of sperm from a surrogate father to create a fertilized embryo.5 Incredibly, it is even possible to utilize all of these methods at once by conceiving a child utilizing a donated egg and sperm and implanting the resulting fertilized egg into the uterus of a surrogate mother.6 Today, these are relatively common and uncontroversial techniques for creating life. Techniques are now being perfected that lie at the very frontiers of medicine, such as the use of preimplantation genetic diagnosis (PGD) to select for or against certain Leon R. Kass, Chairman, President’s Council on Bioethics, Opening Remarks at the First Meeting of the Council (Jan. 17, 2002), available at http://www.bioethics.gov/about/chairman.html.
Fertility LifeLines, Initial Treatments, http://www.fertilitylifelines.com/initialtreatments/index.jsp (last visited Jan. 16, 2009).
American Pregnancy Association, In Vitro Fertilization: IVF, http://www.americanpregnancy.org/infertility/ivf.html (last visited Jan. 16, 2009).
E.g., Lisa Baker, A Surrogate Dries Her Tears, N.Y. TIMES, Dec. 11, 2005, available at http://www.nytimes.com/2005/12/11/fashion/sundaystyles/11LOVE.html.
E.g., Katrina Clark, My Father Was an Anonymous Sperm Donor, WASH. POST, Dec. 17, 2006, at B01, available at http://www.washingtonpost.com/wp-dyn/content/article/2006/12/15/AR2006121501820.html.
Giovanni Frazzetto, DNA or Loving Care?, 5 EMBO REP. 1117, 1117 (2004).
characteristics in a fertilized egg7 or even “germline” genetic engineering at some point in the not-too-distant future.8 As can be imagined, such techniques and the possibilities that they create are infused with controversy. IVF can result in the creation of numerous embryos,9 many more than can ever be implanted in the mother, and arguments rage over the legal status of these fertilized eggs and what their eventual fate should be. Some people argue that the embryos should eventually be given over for adoption,10 and others argue that such embryos provide a promising source of cells for stem-cell research.11 IVF techniques can also result in multiple successfully implanted embryos, forcing parents to choose between selective abortion of some of the resulting fetuses so as to improve the chances of bringing the remainder to term or undergoing a risky multiple-birth pregnancy.12 Debate also swirls around the possibility of human-reproductive cloning, a process where an exact genetic duplicate of an already existing human being could be created.13 John A. Robertson, Extending Preimplantation Genetic Diagnosis: Medical and Non-Medical Uses, 29 J.
MED. ETHICS 213, 213 (2003).
ASS’N OF REPRODUCTIVE HEALTH PROF’LS, HUMAN CLONING AND GENETIC MODIFICATION: THE BASICSCIENCE YOU NEED TO KNOW 5 (2003), available at http://www.arhp.org/uploadDocs/cloning.pdf#search="HUMAN%20CLONING%20AND%20GENETIC% 20MODIFICATION%20THE%20BASIC%20SCIENCE%20YOU%20NEED%20TO%20KNOW%20" (“‘Germline’ genetic engineering is genetic engineering that targets the genes in eggs, sperm, or very early embryos.... Germline engineering is banned in many countries but not in the U.S.”) Georgia Reproductive Specialists, In Vitro Fertilization (IVF-ET): Questions and Answers, http://www.ivf.com/ivffaq.html (last visited Jan. 16, 2009) (stating that “25% of pregnancies with IVF are twins” whereas in the “normal population, the rate one set of twins per 80 births”).
E.g., Nightlight Christian Adoptions, Nightlight Adoptions: Snowflakes Program, http://www.nightlight.org/snowflakeadoption.htm (last visited Jan. 16, 2009).
Liza Mundy, Souls on Ice: America’s Embryo Glut and the Wasted Promise of Stem Cell Research, MOTHER JONES, July/Aug. 2006, http://www.motherjones.com/news/feature/2006/07/souls_on_ice.html.
Ozkan Ozturk & Allan Templeton, Multiple Pregnancy in Assisted Reproduction Techniques, in
CURRENT PRACTICES AND CONTROVERSIES IN ASSISTED REPRODUCTION: REPORT OF A MEETING ON
“MEDICAL, ETHICAL AND SOCIAL ASPECTS OF ASSISTED REPRODUCTION” HELD AT WHO HEADQUARTERSIN GENEVA, SWITZERLAND 17-21 SEPT. 2001 200, 220-21 (Effy Vayena et al. eds., 2002), available at http://www.who.int/reproductive-health/infertility/report.pdf.
Genomics.energy.gov, Human Genome Project Information: Cloning Fact Sheet, http://www.ornl.gov/sci/techresources/Human_Genome/elsi/cloning.shtml (last visited Jan. 16, 2009).
Another controversial process involves the use of PGD not only to screen for inheritable diseases in a successfully fertilized egg but also to screen for other inheritable conditions such as eye color, gender, intelligence, or even perfect pitch.14 In addition, some couples have used ART, and PGD in particular, to intentionally produce disabled children. For example, a deaf, lesbian couple in the United States utilized IVF to increase their odds of having deaf children and have successfully given birth to two deaf children as a result.15 Another example includes a dwarf couple who wanted to use genetic testing to determine if they could have a child that would inherit their dwarfism.16 And in 2003, it was reported that a Chicago-area physician was approached by a couple that wanted the physician’s assistance in using PGD to enable them to give birth to a child with Down syndrome.17 The doctor refused, but in 2008, a study in an American medical journal revealed that of 137 clinics in the U.S. that provide IVF, three of them reported offering the procedure to prospective parents who sought to select for disabilities,18 demonstrating that not all doctors face an ethical quandary carrying out such a technique. Though such numbers indicate that the procedure is far from routine, this science is still in its earliest stages. It is not difficult to imagine a future in which the science is more advanced, where the technology exists to permit prospective parents to routinely utilize PGD to select for or against identifiable genetic conditions.
Robertson, supra note 7, at 214.
See Liza Mundy, A World of Their Own, WASH. POST, Mar. 31, 2002, at W22 (stating that the couple used a deaf sperm donor to increase their chances of having a deaf child and utilized IVF as a method of conceiving).
Peter H. Huang, Herd Behavior in Designer Genes, 34 WAKE FOREST L. REV. 639, 642 (2001).
Judith F. Daar, ART and the Search for Perfectionism: On Selecting Gender, Genes, and Gametes, 9 J.
GENDER, RACE & JUST. 241, 265 (2005).
Susannah Baruch et al., Genetic Testing of Embryos: Practices and Perspectives of US In Vitro Fertilization Clinics, 89 FERTILITY & STERILITY 1053 (2008); see William Saletan, Deformer Babies: The Deliberate Crippling of Children, Sept. 21, 2006, http://www.slate.com/id/2149854 (referring to an earlier survey with the same results).
B. A Survey of In-Vitro Fertilization and Preimplantation Genetic Diagnosis ART, defined as any procedure that involves the handling of eggs or embryos,19 is several decades old in the United States. In this Article, the term will be used primarily to refer to methods of conception utilizing IVF, the means by which an egg is fertilized outside of the body and then implanted in a woman’s uterus.20 IVF was first developed in the late 1970s and early 1980s, and the first child produced via IVF was born in 1978 in England.21 The first child produced by IVF in the Untied States was born in 1981,22 and since then approximately one million babies have been born in this country utilizing IVF technologies.23 IVF is a four-step process that is performed over a month-long period.24 The first step involves the stimulation of the woman’s ovaries with hormones to induce the ovaries to produce several eggs at one time.25 The eggs are retrieved from the woman’s ovaries during a minor surgical procedure and placed in separate petri dishes, after which they are given two to five days (depending on the procedure) to be fertilized by sperm, which are also in the petri dishes.26 Once successful fertilization has taken place, the fertilized
AM. SOC’Y FOR REPROD. MED., ASSISTED REPRODUCTIVE TECHNOLOGIES: A GUIDE FOR PATIENTS 18(2007), available at http://www.asrm.org/Patients/patientbooklets/ART.pdf.
Cooper Center for In-Vitro Fertilization, In-Vitro Fertilization, http://www.ccivf.com/in-vitro_fert.html (last visited Jan. 16, 2009).
Andrea L. Bonnicksen, In Vitro Fertilization and Embryo Transfer, in 4 ENCYCLOPEDIA OF BIOETHICS 2307, 2307 (3d ed. 2004); see Patrick Steptoe & Robert Edwards, Birth After the Reimplantation of a Human Embryo, 2 LANCET 366 (1978).
First IVF Child in U.S. Meets Doctor: Carr Finally Reunited with Obstetrician, MSNBC, Oct. 31, 2003, available at http://www.msnbc.msn.com/id/3088015/.
PRESIDENT’S COUNCIL ON BIOETHICS, REPROD. & RESPONSIBILITY: THE REGULATION OF NEWBIOTECHNOLOGIES 3 (2004), available at http://www.bioethics.gov/reports/reproductionandresponsibility/_pcbe_final_reproduction_and_responsibil ity.pdf.
See Bonnicksen, supra note 21, at 2307; Shared Journey—Your Path to Fertility, What Is IVF?, http://www.sharedjourney.com/ivf/what_is.html (last visited Jan. 16, 2009).
Bonnicksen, supra note 21, at 2307; see Shared Journey—Your Path to Fertility, Ovulation Induction, http://www.sharedjourney.com/articles/induc.html (last visited Jan. 16, 2009).
Bonnicksen, supra note 21, at 2307; Shared Journey—Your Path to Fertility, Embryo Culture, http://www.sharedjourney.com/define/culture.html (last visited Jan. 16, 2009).
eggs—comprised of four to sixteen cells depending on how long they have cultured in the dish—are then transferred to the woman’s uterus two to three days after they were removed.27 Anywhere from two to four embryos may be implanted in the woman’s uterus at the time of transfer in the hopes that one of the embryos will successfully attach to the uterus and begin the process of becoming a fetus.28 Any remaining embryos that are not implanted can be cryo-preserved either for later transfer or disposition, usually in accordance with the wishes of the couple or the woman receiving the IVF treatment.29 After twelve days, the woman returns for a blood test to determine if the embryo has successfully attached to the uterus and pregnancy has been initiated.30 Prospective parents with concerns about the presence of genetic conditions in their children were, in the past, limited to prenatal genetic diagnosis, consisting of one of two tests: (1) chorionic villus sampling, a procedure in which tissue from the placenta is extracted for examination, or (2) amniocentesis, a procedure that utilizes amniotic fluid containing small samples of fetal tissue.31 The greatest limitation of these procedures is the fact that neither test can be done until well after the embryo has been implanted in the uterus and developed into a fetus, usually about nine to eighteen weeks after implantation, while an embryo develops into a fetus generally about eight weeks after
Bonnicksen, supra note 21, at 2307; see Shared Journey—Your Path to Fertility, The IVF Process:
Embryo Transfer, http://www.sharedjourney.com/define/transfer.html (last visited Jan. 16, 2009) [hereinafter The IVF Process: Embryo Transfer].
Bonnicksen, supra note 21, at 2307; The IVF Process: Embryo Transfer, supra note 27.
The IVF Process: Embryo Transfer, supra note 27; see Bonnicksen, supra note 21, at 2307.
The IVF Process: Embryo Transfer, supra note 27.
Richard J. Tasca & Michael E. McClure, The Emerging Technology and Application of Preimplantation Genetic Diagnosis, 26 J.L. MED. & ETHICS 7, 7 (1998); Familydoctor.org, http://familydoctor.org/online/famdocen/home/women/pregnancy/fetal/144.html (last visited Jan. 16, 2009) (explaining briefly the amniocentesis and CVS procedures).