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Inequality, Democracy and the New Human Biotechnologies: Presentation Summaries

July 15th, 2004

Susan Lindee asks why the gene is so powerful and so important in popular culture, and what the implications of this are for equality and democracy. She notes that genes are perfectly suited to a particular configuration of healthcare delivery, private industry, and global economic relations, and that genes work well for the way we organize medicine, research, culture, politics, and society. Her research shows that this fixation with genes goes back to the 1950's, and has skewed medical research since. She recounts the story of Jesse Gelsinger, the teenager who died in 1999 of a gene therapy experiment at the University of Pennsylvania, and notes how the economic conflicts of interest of the lead scientist involved went unreported by the press and were passed over by both the designated bioethicists and by the University, which also had a financial interest in the research. She concludes that neither bioethicists, scientists, nor universities have earned our trust, and that we need stronger oversight and control of human genetic research. She notes that in the United States much discussion of acceptable biotech practice is posited on a model of free and individual choice, and suggests that this shuts down public debate about the social consequences of these technologies. The decision to support the human genomic project, or to pursue technical fixes for very complicated problems, are examples of the way in which powerful interests can dominate, as a result of people having come to believe that the only important issue is whether or not their options to choose remain uninfringed. She concludes by reaffirming that biotech research and commercial enterprise must be more transparent and more accountable.

Marsha Tyson Darling begins by recounting the history of eugenics, from its origins in the late 19th century in Europe and the U.S., through its embrace by intellectual and social elites in the 1920's, to its eventual denouement in the Nazi Holocaust. She notes that eugenic beliefs were an explicit part of early movements promoting birth control in the West. While Northern Europeans were being encouraged to procreate, population restriction and sterilization programs were instituted for people of color in the United States and the global South. Throughout these efforts eugenic pseudo-sciences attached themselves to and were empowered by new technologies. She notes that this dynamic is present today: although experience has shown that fertility reduction follows socio- economic advance, and not the other way around, technologies to reduce fertility are given precedence over social and political initiatives to ensure distributive economic justice. Thus, eugenics as fertility reduction for poor women has survived. She suggests further that the pursuit of "perfection" continues as a bridge between state-sponsored eugenical promises of improving hereditary stock and more recent proposals for "designer babies." Eugenics is now being promoted as a consumer, market-based intervention, packaged as a "choice" option in a world increasingly preoccupied with an individual's right to possess anything money can purchase. Darling cites the examples of pre-implantation genetic diagnosis and sex selection as particularly worrisome. She concludes by asking if we are prepared to engage tough questions that these technologies raise about the relation between individuals and society, and whether we are prepared to rein in the excesses of eugenical fanaticism with needed laws and policies.

Sheldon Krimsky notes that although the scientists who developed the first recombinant DNA technologies were aware of its safety risks to lab-workers and the public, and agreed to a self-imposed moratorium until research standards could be worked out, this effort had the effect of closing off discussion of the broader social implications of these technologies. When the researchers realized several years later that they stood to reap great financial rewards from their work, even minimal discussion of risks and regulations was discouraged. These developments coincided with the growth of anti-regulatory sentiment in the country and the promotion of consumer choice and sovereignty as determining values. Pharmaceutical companies today operate with little public oversight, and support individualized, rather that social, approaches to health. This market-driven dynamic can be expected to increase as knowledge gained from the Human Genome Project enables a wide range of genetic tests to be commercialized. A second major problem regards genetic discrimination and the future of health insurance. The presence of one gene or another will constitute a pre-existing condition that could disqualify most people for various sorts of health insurance. The choices before us are whether we should just let the market system operate, whether the pressure that's put on future parents is going to continue unregulated, or whether we have some kind of rational system for deciding which of these technologies will be used, who will use them and who will benefit from them.

Richard Hayes, begins by asserting that the new technologies of human genetic modification are among the two or three most profoundly consequential technologies of the 21st century, that they hold potential for both great good and great harm, and that at present there are few controls over their development and use. He says that if left unchecked these technologies could greatly exacerbate existing inequalities in health and social power, and that certain applications could open the door to a new high-tech eugenics. He reviews the many technologies and practices of concern: genetic testing and screening, gene patenting, athletic gene doping, human cloning, proposals for inheritable genetic "enhancement" and others. He noted that models exist, in Canada, the United Kingdom and elsewhere, for drawing lines that allow responsible medical research to proceed while proscribing socially unacceptable eugenic technologies. He notes, however, that serious obstacles will need to be overcome before we can expect these to be universally adopted. These obstacles include the fact that opinions concerning the new human biotechnologies don't fall easily along the conventional left-right ideological spectrum and thus impede quick and decisive activist responses; that the merger of the academic research community and the commercial biotech sector creates new incentives for scientists to resist social accountability; and that an ideology of neo-eugenic inevitablism being promoted by bioethicists and public intellectuals feeds into public feelings of powerlessness. He calls for concerned individuals and groups to work together to educate liberal and progressive constituencies about the nature and challenge of the new human biotechnologies, and to push for needed domestic and international policies.


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