Playing the odds or playing God? Limiting parental ability to create disabled children through preimplantation genetic diagnosis.

AuthorSchiavone, Karen E.

Suppose [persons with disabilities] believe that their child will be happier if she shares her parents' condition, and take action to prevent her from developing normally, for example, not giving the growth hormone that will make her taller, or not providing a cochlear implant that might overcome a mild form of congenital deafness. Such actions would arguably harm the child and constitute child abuse, for the child would be denied a treatment essential for future functioning in society.

Unless it could be shown that children born to such parents are in fact better off if they share the parents' disability, stopping parents from prenatal lessening of offspring abilities would not ... interfere with their procreative liberty. (1)

These words, written by Professor John A. Robertson, resonate more in today's society than when first written fifteen years ago, when screening of preimplantation embryos for genetic disease was only experimental. (2) No longer are Professor Robertson's words a supposition of what our future holds--our future is here. And while originally preimplantation screening was thought to be a mechanism to discard embryos carrying disease, clearly Professor Robertson foresaw the downside to this technology long before it became a reality. Today, some couples are no longer satisfied with having perfectly healthy babies; they would rather have a child that is disabled, like them.

This Comment argues that parents do not have a moral or legal right to harm their children by ensuring that they are born with a disability or disease through the use of preimplantation genetic diagnosis ("PGD") or other assisted reproductive technologies ("ARTs"). There is no constitutional right to use PGD, and so the individual states should be free to regulate this arena. At this time, however, no states have implemented any legislation that would prevent parents from using PGD in any capacity, whether to help or harm their future children. As such, those children already born through PGD, who cannot benefit from present or future regulation of reproductive technologies, should benefit from indirect methods of regulation through the tort law system.

Part I of this Comment will explain the science behind current ARTs, specifically PGD, and address instances in which parents have used PGD to create disabled or diseased children. Part II will discuss the current state of reproductive law in the United States, as well as legislation currently in effect in Canada and Western Europe. Part III will examine the ethical implications presented by the use of PGD to limita child's opportunities, mainly the conflict between the ethical principles of beneficence and autonomy, and how both of these cannot be achieved when parents use PGD for this purpose. Part IV will analyze why parents do not have a constitutional right to use PGD to create disabled or diseased children, and why the states may intervene with regulation. Finally, Part V will present an alternative solution to direct regulation through federal or state legislation by using the tort law system as an indirect method to regulate these issues.


    ARTs refer to those fertility treatments that include the handling of both sperm and eggs. (3) ART encompasses in vitro fertilization ("IVF") (4) and its variations, which include: intracytoplasmic sperm injection ("ICSI"), (5) gamete intrafallopian transfer ("GIFT"), (6) zygote intrafallopian transfer ("ZIFT"), (7) and PGD. (8) Accomplished prior to IVF transfer, PGD is the process by which one or two cells are removed from a human zygote, or biopsied, after which the genetic makeup of the cells is analyzed. (9) Only those embryos that were not carriers of whatever gene was being screened for are then implanted in the uterus.

    PGD was designed to screen for disabilities or diseases in order to avoid passing on serious genetic defects to offspring. (10) Clinics can use PGD to test for colon cancer, cystic fibrosis, early-onset familial Alzheimer disease, Fanconi anemia, hemophelia, Huntington chorea, Marfan syndrome, muscular dystrophy, polycystic kidney disease, sickle cell anemia, and Tay-Sachs disease, as well as for milder conditions, including hereditary deafness. (11) Once the popularity of PGD began to grow, an unanticipated side effect occurred: rather than using PGD to avoid disability or disease, some parents began choosing to have offspring that carried the inheritable disability or disease. Anecdotal evidence shows that parents have requested clinics to select for deafness, achondroplasia (dwarfism), Down's syndrome, and phenylketonuria. (12)

    A reported three percent of IVF clinics in the United States have allowed parents to use PGD or other ARTs to select for embryos with disabilities or diseases. (13) When it became possible in 1995 to screen for the gene that causes achondroplasia, a dwarf couple decided to use IVF and PGD in order to have a dwarf child. (14) In 2002, deaf parents Sharon Duchesneau and Candy McCullough received much hostile backlash when they sought to have a second deaf child. (15) By using the sperm of a deaf donor, Duchesneau and McCullough eliminated the possibility of having a hearing child. (16) As predicted, their son was born with severely impaired hearing. (17) These representative cases are by no means the sole occurrences, and children born with a disability or disease by means of preimplantation screening deserve some protection under the law.


    Currently, the United States has yet to enact any federal law to regulate the use of PGD, and similarly, no individual state has set forth legislation to regulate PGD. Nevertheless, the ART industry is not completely without guidance. The United States Supreme Court has handed down decisions on parental rights and reproductive liberties, and some states, as well as Congress, have enacted legislation on some aspects of human reproduction. Furthermore, much of Western Europe has passed legislation on the regulation of PGD.

    1. Precedent Concerning Parental Rights and Procreation

      1. The Parental Right to Direct the Care, Custody, and Control of Children

        The Supreme Court has long recognized that parents have a fundamental right to make decisions regarding the care, custody, and control of their children. (18) First, in a long line of cases beginning in 1923, the Court held in Meyer v. Nebraska that parents have a right to "establish a home and bring up children" and "to control the education of their own." (19) Shortly thereafter, the Court in Pierce v. Society of Sisters held that the liberty interest of parents includes directing the upbringing and education of their children. (20) Several years later, in Prince v. Massachusetts, the Supreme Court declared "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." (21) Following these cases, the Court has continuously held that there is a strong presumption that fit parents act in the best interests of their children. (22) As such, as long as a parent continues to "adequately care[] for his or her children ... there will normally be no reason for the state to inject itself into the private realm of the family to further question the ability of that parent to make the best decisions concerning the rearing of that parent's children." (23)

        Under the doctrine of parens patriae, however, the government has a responsibility to care for and protect children from neglect, abuse, and fraud. (24) Under the Child Abuse and Prevention and Treatment Act, child abuse can occur through actor omission and is defined as any "physical or mental injury, sexual abuse or exploitation, negligent treatment, or maltreatment of a child ... by a person ... responsible for the child's welfare under circumstances indicating harm or threatened harm to the child's health or welfare." (25) The courts have further defined neglect as a willful or unintentional "failure to exercise the care that the circumstances justly demand." (26) It has also been recognized that the meaning of neglect changes as the context of the surrounding circumstances change. (27) While one most often thinks of child abuse or neglect as physically manifested, abuse and neglect frequently occurs by omission of care; and in these circumstances as well, the state has a compelling interest to interfere with the parental right to make decisions regarding the care, custody, and control of their children.

      2. The Fundamental Right to Procreate

        The Supreme Court has also found that there exists a fundamental right to procreation, as "[m]arriage and procreation are fundamental to the very existence and survival of the race." (28) The Court framed this issue as one of privacy, stating that "[i]f the right of privacy means anything, it is the right of the individual ... to be free from unwarranted governmental intrusion into matters so fundamentally affecting a personas the decision whether to bear or beget a child." (29) The right to procreate, however, is not absolute. The Court has consistently held that states may intrude upon one's fundamental rights, including the right to procreate, where the state has a compelling interest. (30)

        Historically, people viewed as being mentally incompetent have been denied the right to procreation. (31) Some state statutes still provide for sterilization of the incompetent. (32) Sterilization for the mentally incapacitated is usually done when it is in the best interest of the person or out of medical necessity, even though it eliminates the right to procreate. (33) For instance, in In re Angela D., the California Court of Appeal, Fourth District, authorized the sterilization of an incompetent where alternate forms of contraception and full-time supervision were not available, and where she was likely to engage in future...

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