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Eugenics concerns rekindle with application of gene therapy and genetic counseling

Nature Biotechnology volume 20, pages 531532 (2002) | Download Citation


Virginia governor Mark Warner apologized publicly early in May for “Virginia's participation in eugenics,” alluding specifically to a now-repudiated 1924 law endorsing involuntary sterilization. Although most such US state laws were also rescinded several decades ago, concerns over eugenics are being renewed among molecular geneticists and others seeking to develop clinical protocols for human gene therapy.

Strictly speaking, research aimed at developing gene therapy for clinical application to human patients is not the same as using similar gene-based techniques to enhance human performance traits, points out Theodore Friedmann of the University of California San Diego Center for Molecular Genetics (CA) and current chair of the Recombinant DNA Advisory Committee (RAC) of the US National Institutes of Health (NIH; Bethesda, MD), whose members may be called on to review the scientific feasibility and social merit of clinical research proposals that are based on gene transfers—though so far into only somatic, not germline, cells.

“No protocols for out-and-out enhancement have been submitted” to the RAC, and members of this committee intimate that they would not be “receptive” to considering such proposals if they were submitted, Friedmann says. However, gene transfer as a technically feasible approach to making such enhancements—albeit one not yet ready for prime time—continues to pop up and to attract serious commentary in other, ever-widening circles. For example, sessions during the annual meeting of the American Society of Gene Therapy (Milwaukee, WI), being held this month in Boston, will focus on gene transfer as a potential means of “enhancement for athletic performance” and also on making “germline modification an acceptable procedure.”

Last March, the World Anti-Doping Agency (WADA; Montreal, Canada) convened a conference at the Banbury Center of the Cold Spring Harbor Laboratory (CSHL; Cold Spring Harbor, NY) that focused on gene transfer as a potential means for enhancing performances of athletes. “WADA is committed to confronting the possible misuse of gene transfer technology in sport,” says its chair Richard Pound. “The same kinds of people who cheat in sport today will probably try to find ways to misuse genetics tomorrow.” The organization, an independent forum for developing anti-doping policies and protocols for competitors in international athletic contests, is developing a formal code of conduct and plans to incorporate language explicitly prohibiting uses of this technology, much as it prohibits athletes who compete in the Olympics from using performance-enhancing drugs and biologics.

No particular athletic performance–enhancing protocol based on gene transfer is ready yet for clinical testing, according to Friedmann. However, several approved phase 1 clinical protocols, all of which are being pursued for their potential in meeting therapeutic needs in specific patient groups, conceivably could be exploited to enhance athletic performance in otherwise healthy individuals. These protocols include transfer of genes encoding a growth hormone to stimulate muscle growth, an insulin growth factor to improve muscle growth and repair, and erythropoietin to stimulate red blood cell production.

Some of the gene-transfer performance-enhancement schemes now being contemplated echo attitudes and goals integral during the early part of the last century to the “better babies” and “fitter families” movements that represent an often-overlooked component of the larger eugenics movement of the period. For instance, the first of many competitions to evaluate “better, standardized babies” appears to date back to the Louisiana State Fair of 1908, according to Steven Selden of the University of Maryland (College Park, MD), who spoke during another recent conference, “American Eugenics and the New Biology: Perspectives and Parallels,” held at the CSHL Banbury Center in April. At the peak, baby-judging contests were held in some 40 states, soon becoming “enmeshed with eugenics,” he says.

Other components of the broader eugenics movement took shape at the predecessor institution to the CSHL, part of which was then called the Eugenics Record Office (ERO) of Cold Spring Harbor. David Micklos and Jan Witkowski of CSHL are leading a major effort to build a website that makes its and similar archived records readily accessible to scholars and the general public.

Those archives indicate that many of the leaders of the eugenics movement were eminent scientists of their day, not “a lunatic fringe,” says Garland Allen, a biologist at Washington University (St. Louis, MO) and another participant at the April conference at the Banbury Center. For example, Charles Davenport, who established the ERO, came to his interest in human eugenics in part from his systematic efforts to breed chickens, and he was not at all a “marginal figure” among geneticists of his day, according to Allen. By 1910, Davenport was building a substantial effort involving field studies of families, pedigree building, and compilations of disease indices.

Over the next two decades, Davenport and other exponents of the eugenics movement effectively lobbied for immigration quotas, mandatory sterilization laws at the state level, and the incorporation of information on this subject into high school science textbooks. While those laws were in force, more than sixty-six thousand individuals throughout the US were sterilized, according to Allen. In a Supreme Court opinion endorsing the Virginia statute, Oliver Wendell Holmes compared sterilization to vaccination, arguing that such mandated procedures were based on science and were important to maintaining public health, points out Paul Lombard of the University of Virginia Law School (Charlottesville, VA). Lombard says that state-level, anti-miscegenation racial integrity laws were also getting a “eugenics spin during the 1920s.”

Even with such laws now repudiated, some policy makers worry that genetic counselors may sometimes pressure clients to pursue particular outcomes—and inadvertently risk practicing yet another form of eugenics, according to Barbara Biesecker of the National Human Genome Research Institute (NHGRI) at NIH. Prenatal genetic testing typically provides complex but imperfect information to prospective parents whose understanding of what those test results mean varies across a wide spectrum, she says.

Meanwhile, the ways in which counselors interpret genetic testing results to their clients are not free of bias, and may reflect subtle, perhaps subliminal tendencies to persuade some clients to make irreversible medical decisions. There is “no real example of forced eugenics, but there are some systematic pressures to encourage [affected families] to terminate pregnancies, reflecting biases against people with disabilities,” Biesecker says. Genetic testing thus finds itself in “a very awkward period,” amounting almost to a “milieu of personal eugenics.” And, much as those involved in gene transfer research are examining issues such as performance enhancement and germline gene transfers that could become part of a new eugenics movement, genetic counselors find themselves in need of re-examining what to tell their clients who face irrevocable decisions based on findings from imperfect genetic tests.

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