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With Reproductive Freedom and Distributive Justice for All

Franklin Zweig

From Chance to Choice: Genetics and Justice. Allen Buchanan, Dan W. Brock, Norman Daniels and Daniel Wikler. xiv + 398 pp. Cambridge University Press, 2000. $29.95.

From Chance to Choice: Genetics and Justice opens with four scenarios that hint at some of the perplexities with which the genetic revolution may soon confront us:

  • A religious cult wants to mass-produce human embryos cloned from the group's leaders.
  • Mass screening that allows prospective parents to detect most genetic susceptibilities for illnesses becomes possible and leads to controversy over whether people should be allowed to inflict avoidable diseases on their children.
  • Parents begin aborting fetuses with combinations of genes that predict they will not be in the highest quintile of intelligence or height.
  • Congress debates whether insurance companies should be required to cover mood-enhancing drugs for people who have a gene for mild depression.

These are but a few of the possibilities as quantitative assessments of human genetic diversity and variation are converted into commercial property and made available in the health care marketplace. Choices for individuals and society will simultaneously expand, diverge, overlap, intertwine, transpose and contract. Events in the current genetic gold rush are moving with great speed; From Chance to Choice is intended to be a meta-manual for policy leadership at this critical juncture. It presents ethical principles designed to serve as guideposts both for policy makers and for individuals making choices for themselves and their families.

The authors, who are philosophers and bioethicists, urge those designing public policies to consider measures beyond "rules of thumb" (their term for ad hoc, temporary, disconnected solutions precipitated by pressurized, interest-group politics). They aspire to be midwives in a rational, deliberative process too seldom seen in Congress and state legislatures. Governance is the bottom line for them. Deep in their final chapter on policy implications, they say that their goal in this book was to determine "the principles that might govern a just and humane society in the wake of the genetic revolution."

Those principles, developed in preceding chapters, can be summed up as follows:

  • Genetic interventions that constitute health care (those that restore or maintain typical functioning) should be provided equally to all who need them. Genetic engineering should not be used to equalize talents, only to ameliorate conditions that damage opportunity or cause serious harm.
  • Reproductive freedom should be legally protected, particularly against coercive eugenics. People should consider the effects of their reproductive decisions on their descendants and on society.
  • Exclusion and stigmatization of citizens ("genetic ghettoes") should be avoided. Each life should be valued; people with disabilities should be equal members of communities.
  • The state has an important policy role to play in regulating markets to prevent discrimination against those with "disfavored genes," in developing clinical practice guidelines for medical professionals and perhaps in subsidizing access to services.

Important works that preceded From Chance to Choice include the Institute of Medicine's widely used 1994 manual Assessing Genetic Risk—which focuses on available genetic tests, alerting clinical researchers to bedside ethical issues and privacy concerns—and Philip Kitcher's more abstract The Lives to Come (1996), which discusses the kinds of technological interventions foreseeable from the Human Genome Project. From Chance to Choice advances principles of justice extrapolated from the durable doctrines of Harvard political philosopher John Rawls. Allen Buchanan and his coauthors expand the ethical concept of maleficence successfully and persuasively argue that to do no harm is a highest-order value. They seldom cite the standard text, Principles of Biomedical Ethics, by Tom Beauchamp and James Childress, presumably because they consider it too ad hoc, too prone to support quick policy fixes.

The authors promote and then abandon a retrospective analytic technique, called ethical autopsy, for policy deliberations; more examples of its application would have been helpful. The use of scenarios is dropped early, and readers may occasionally find themselves lost in a thicket of abstractions, longing for concrete illustrations and clarifications. From Chance to Choice sometimes gets bogged down in its own rhetoric, much of which is guild-directed—for philosophy mavens only. The appendix explaining the "methodology of moral reasoning" used in the book is a case in point: It discusses wide reflective equilibrium theory, foundationalism, communitarianism and principlism.

Although the book is not an anthology of separate articles, each author played a larger role in some chapters than in others, and as a result some chapters are more readable than others. This accounts in part for the book's disjointed, discontinuous quality; poor organization of some of the material is another factor. There are stretches of dense prose that philosophy-challenged readers may find rather inaccessible; a glossary for their benefit would have been a welcome addition. Despite these shortcomings, the book's messages are worth the hard work of digging them out.

The authors review the horrific results of 20th-century eugenics, including the Nazi nightmare. But they acknowledge that it may become impossible to avoid "positive" or "negative" eugenics as our technological control increases. They seem torn about this: At some points in their discourse, they take the stance that we should not embark on a quest to engineer our biological future, that we lack the wisdom to do so. At the same time, they seem drawn to gene technology as to an irresistible siren call. They vigorously claim that health care is a right that should include the benefits of gene technology—cancer cures, an end to dementia, and better, healthier, more successful children.

Legislation to deal with such dilemmas is not on the horizon. Congress, which is loath to act in the absence of consensus, has been slow to anticipate needed policies. The only durable gene policy of the past decade is the federal prohibition against use of genetic tests for health plan eligibility decisions in the absence of a genetic disease diagnosis (Health Insurance Portability and Accountability Act, U.S. Code, vol. 42, secs. 201ff., 1996). So desperate are lawmakers to avoid a genetics policy minefield that they let stand without challenge President Clinton's recent executive order prohibiting the use of genetic tests in federal employment decisions (Executive Order 13145, Federal Register 65, no. 6877 [February 10, 2000]). It is unfortunate that From Chance to Choice went to press too soon for its authors to conduct an ethical autopsy on the no-gene-tests-in-federal-employment declaration, analyzing it for equitability, fairness and equality of opportunity. It would have been a far better, and less frivolous, vehicle for testing the book's principles than the four scenarios with which the book opens.

The authors also miss many opportunities to test their principles on instructive court cases—for example, the 1998 decision by the U.S. Court of Appeals for the 9th Circuit affirming a federal right of genetic privacy in a case alleging surreptitious genetic testing in the workplace (Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F. 3d 1260). Perhaps to avoid policy making's "hurly-burly," as they put it, they ignore justice as it is applied or enforced. They use a single ancient U.S. Supreme Court decision, Wisconsin v. Yoder (406 U.S. 205 [1972]), to illustrate problems of choice making and the weighing of individual rights against government interests. This was a case in which the court balanced the rights of the Old Order Amish to withdraw their children from school at age 14 against state interests in the education of children. The relevance of this to parental choice making regarding genetic enhancement is distant, at best. Fundamental liberties have in some ways expanded significantly over the past three decades; however, there has been no adoption of a right to health care.

Buchanan and his coauthors favor procedural as well as distributive justice. They champion access to gene technology and inclusiveness in decision making. They could have strengthened their arguments by marshaling relevant court cases on the nature of justice. Procedural justice, for example, is importantly framed by the decision in Kelly v. Goldberg (397 U.S. 254, 267-70 [1968]), a case concerning access to welfare benefits, in which the Supreme Court defined justice as the fundamental fairness that society has come to expect in proceedings with the state.

Gene technologies are emerging to a significant degree under the auspices of the private sector, in the policy domains of corporate boardrooms. The authors do not pay enough attention to the relationship between the transnational genome research business and their ethical principles. They want their concepts of justice to be applied globally, but they tend to restrict their examples to U.S. policy making. Genomic businesses as private governance units may exceed the reach of authoritative U.S. governmental institutions. In one important area—regulations to protect human subjects in gene therapy clinical trials—American policies may be sidelined by the ability of those businesses to avoid them in other nations. To realize human biotechnology's best promise for human health and welfare, large-scale human clinical trials of gene therapies and reproductive enhancements will be necessary. If human research subjects are not available in large numbers here, they may be found beyond our borders. Determining who is to take responsibility for such human experimentation is an ethical matter of the utmost importance and of monumental difficulty. However, From Chance to Choice says much about eugenics and little about human experimentation. The book says even less about another incendiary issue: biological property ownership. Will patent term limits and full disclosure features sufficiently serve justice outcomes? Should gene inventions resulting in humanitarian treatments crafted with public money be compulsorily licensed?

We will need answers to these and other questions as this decade unfolds. Policy makers who have read From Chance to Choice will be better equipped to provide them.

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