GENES AND DISABILITY: QUESTIONS AT THE CROSSROADS
Mary Crossley & Lois Shepherd
The articles contained in this issue spring from papers presented at a conference that we had the privilege of hosting in March of 2002 at the Florida State University College of Law. The conference, entitled “Genes and Disability: Defining Health and the Goals of Medicine,” was designed to elicit studied discussion of the relationship of genes to disability, genes to health, and genes to human well-being more generally. Assumptions about these relationships underlie nearly every legal and public policy decision relating to the subject of genetic medicine—from liability for negligent prenatal testing to statutory prohibitions of insurance discrimination on the basis of genetic information. Yet how we look at genetic conditions and their relationship to health and disability, or to notions of “normalcy” and “deviance,” is not strictly or even primarily a legal matter. Instead, the issues raised in this context involve ethical considerations and require an understanding of the social contexts in which those issues appear. For this reason we sought to include in the conference scholars from a variety of fields of study. The result was the gathering of sixteen scholars from the disciplines of law, medicine, medical ethics, history, philosophy, religion, sociology, psychology, and anthropology. While the conference was designed to be multi-disciplinary, it placed some emphasis on how various ethical responses can or should be reflected in law. The following collection of articles brings the insights of other disciplines to urgent questions regarding how the law should respond to advances in genetic medicine.
TAKING EUGENICS SERIOUSLY: THREE GENERATIONS OF ??? ARE ENOUGH?
Paul A. Lombardo
This selection was taken from the Presidential address of L.C. Dunn, delivered at the 1961 meeting of the American Society of Human Genetics. Dunn (1893-1974) was particularly well positioned to survey his field’s history for fellow geneticists, since his life and career spanned the entire period during which genetic study was initiated, developed, and took its place among the sciences. His comments on the role of eugenics were also especially noteworthy because he knew all of the major scientists who played a part in the early years of genetics, and many of them were the people he described as having “pursued and often taught” both eugenics and genetics.
AREN’T WE ALL EUGENICISTS? COMMENTARY ON PAUL LOMBARDO’S “TAKING EUGENICS SERIOUSLY”
Mary B. Mahowald
The infamous statement of Justice Oliver Wendell Holmes, “Three generations of imbeciles are enough,” has long been recognized as a shameful example of how eugenics has been practiced not only in horrendous situations such as Nazi Germany, but even in a country founded on the principle that “all Men are created equal.” From the start, the flawed wording of this principle was evident: “men” was interpreted to exclude women and Negroes. Both groups were excluded from voting rights and other civil rights that white men enjoyed for many years thereafter. The United States Supreme Court ruling in Buck v. Bell denied another group of people the same basic right that Holmes and his colleagues enjoyed; apparently they did not think that people with mental retardation were “men.”
GENETIC HEALTH AND EUGENICS PRECEDENTS: A VOICE OF CAUTION
Larry I. Palmer
Genetic health is a confusing but increasingly important cultural construct. A little over a decade ago, I delineated the difference between a social or relational definition of health, which is embedded in any given society’s basic beliefs about the nature of illness and death, and a biological conception of health and illness as the absence of disease. The growing prevalence of genetic explanations for disease means our contemporary concept of biological health includes the idea of an individual’s risk of disease or even death. A genetic definition of health thus incorporates the idea of the absence of the risk of illness processes, not necessarily in ourselves, but in those to whom we are genetically related. The goal of “genetic medicine”—if we start to use that term—would be to reduce or eliminate the genetic risks to health. Ironically, genetic health is the ultimate notion of a relational concept of health because the risk of disease or ill health is not individual, but social. Thus, the concept of genetic health—or in its negative form, “genetic disease or defect”—always involves a social unit: the family, a couple contemplating having children, an individual planning single parenthood, or an ethnic or geographically defined group. Let me illustrate this point with a bit of personal history.
PRENATAL DIAGNOSIS AND THE SELECTION OF CHILDREN
Jeffrey R. Botkin
For many adults, a central concern in life is the health and welfare of their children. A new baby ushers in decades of dedicated work and anxiety to foster the child’s life, to limit the inevitable pain, and to provide every advantage parents can reasonably afford. For most of human history, this work began at birth because, until recently, pregnancy was a black box, largely beyond parental influence other than through prayers and wholesome living. This situation has changed profoundly over the past twenty-five years. An array of technologies now can provide a detailed examination of the embryo and fetus, genetically, biochemically, and anatomically. The day is not yet here when we can effectively change the embryo or fetus from these perspectives, but we can effectively choose to accept or reject what we find. The ability to select our children based on detailed biologic characteristics is new. Efforts to provide the child with every advantage may begin with choosing the desired child at the very beginning. Questions over whether our society should promote or restrict this power also are new. These new capabilities will likely create one of the most difficult and divisive social debates over the next century.
A CHOICE OF EVILS IN PRENATAL TESTING
The aim of this paper is to examine the comparative strengths and weaknesses of two approaches to mitigating the offense given, and harm threatened, by prenatal testing for impairments: limiting such testing to the most severe diseases and impairments, or imposing no medical limits at all. Although I favor the latter approach, I will argue that the alternatives present a choice between distinct evils.
DISABILITY EQUALITY AND PRENATAL TESTING: CONTRADICTORY OR COMPATIBLE?
Is it possible for the same society to espouse the goals of including people with disabilities as fully equal and participating members and simultaneously promoting the use of embryo selection and selective abortion to prevent the births of those who would live with disabilities? As currently practiced and justified, prenatal testing and embryo selection cannot comfortably coexist with society’s professed goals of promoting inclusion and equality for people with disabilities. Nonetheless, revamped clinical practice and social policy could permit informed reproductive choice and respect for current and future people with disabilities. In the first Section of this Article, I argue that the typical justifications offered by practitioners and researchers for prenatal testing are mistaken about the implications of disability.
THE IDEOLOGICAL CONTEXT OF THE DISABILITY RIGHTS CRITIQUE: WHERE MODERNITY AND TRADITION MEET
Erik Parens and Adrienne Asch have summarized the disability rights critique of prenatal testing in two broad claims: “that prenatal genetic testing followed by selective abortion is morally problematic, and that it is driven by misinformation.” These claims, though consonant with assertions of many pro-life groups, are intended to serve different ends. Parens and Asch explain that most authors associated with the disability rights critique are feminists who support a woman’s right to abortion. In contrast, pro-life adherents predicate differences between women and men on inexorable natural truths and define their position about abortion as an inevitable correlate of a world in which women and men enjoy different statuses and perform different roles. Yet, pro-life activists would seem further to echo adherents of the disability rights critique in categorizing abortion of “‘damaged’ embryos” as the “most offensive” of all abortions. Again, however, these concrete similarities are belied by each group’s encompassing goals. Adherents of the critique do not argue that selective abortion is problematic because abortion is problematic. Moreover, the “misinformation” to which Parens and Asch refer does not refer expressly to the ontological status of the fetus. Rather, they refer to misinformation about “what life with disability is like for children with disabilities and their families.” To adherents of the critique, its basic propositions are not concerned centrally with abortion. Rather these propositions concern attitudes toward disability and “toward children, parenthood, and ultimately ourselves.”
GENETIC DISCRIMINATION IN A TIME OF FALSE HOPES
John V. Jacobi
Law anticipated genetic discrimination in insurance. Legislators in the 1990s accepted genetic equity as a valuable, if abstract, concept largely removed from the realities of insurance underwriting or coverage decisions. Things may become complex quickly, however, when genetic discrimination laws face reality. Difficulties suggest themselves when one attempts to define “discrimination” in practice and then to match statutory language to the practical problem of limiting its effect. Enforcing genetic prohibitions raises perplexing regulatory problems, as forms of health finance morph more rapidly than regulators can anticipate.
SELECTING AGAINST DIFFERENCE: ASSISTED REPRODUCTION, DISABILITY AND REGULATION
In 1993, Martha Field suggested a standard for parental discretion in cases of abortion and in cases concerning what she referred to as “handicapped” newborns. She argued against parental discretion to control the fate of a handicapped newborn when that fate involves ending the newborn’s life. Similarly, on the grounds of equal protection from discrimination, Field insisted “that whatever the moment at which a right to life begins for children who do not have handicap, the same stage of development defines the right to life of children who do have handicap . . . [and that] [t]his antidiscrimination approach applies not only after birth, but even before.” In other words, on the basis of equal protection from discrimination, we ought not kill newborns with handicaps; nor should we deprive them of the right to be born, whenever that right obtains to other fetuses.