Shaping Science and Technology Policy: The Next Generation of Research

PART 4: SHAPING LIFE

    S cience and technology policy has, like many areas of study and action, had to shift its foci to keep pace with the changing scientific and political arenas that it engages. This section acknowledges that contemporary advances in the life sciences, particularly genomics and reproductive technologies, and their associated research programs and therapeutic techniques, are a central scholarly and practical concern across the globe. Although the strands of DNA are often portrayed as things that unite us as humans (and indeed, even reveal our commonalities with chimpanzees, worms, and yeast!), the authors here examine how social conditions including culture, ethics, race, and ethnicity create differences in ethical perceptions of DNA technologies, ethical practices, and the distribution of benefits. For these authors, the cultural and political inputs into policy are just as critical in shaping the human outcomes of the technologies of life as are the scientific tools and the therapeutic techniques. The Human Genome Project promises myriad and beneficial genetic technologies. The question remains, however: Which segments of society will benefit from these technologies? Majority communities have and continue to benefit a great deal more than minorities. Tené Hamilton Franklin, a genetics counselor, describes in her chapter the Communities of Color and Genetics Policy Project, which used a model of civic mobilization developed during the civil rights movement to engage African Americans and Latinos of diverse socioeconomic levels in dialogues about genetic research and technology. From these dialogues, the project developed recommendations for laws, professional standards , and institutional policies regarding the use and application of 273 genomics. The project conducted focus groups and multiple dialogue sessions with fifteen community-based organizations in Alabama and Michigan, with discussions that addressed not only genomics but also concerns about access to health care, minority inclusion in human subjects research, and safeguards to protect against research abuses. Replicating such efforts will facilitate public education about genomics and enable the public to collaborate with ethicists, researchers, medical practitioners , and lawmakers to shape science, technology, and policies in ways that provide more equal opportunities for underrepresented and underserved communities. The next chapter, by philosopher Michael Barr, confronts a different aspect of community in the age of genomics. Barr investigates the ethical aspects of the linkage of large-scale, population-based DNA samples with personal medical information, a much-anticipated method for studying the combined effect of genes, environment, and lifestyle factors on diseases. The United Kingdom, for example, approved £60 million ($90 million) for a national genetic database to link personal medical information contained in National Health Service records, with blood samples collected from 500,000 middle-aged volunteers. Known as BioBank UK, the project is organized by the Wellcome Trust, the Medical Research Council, and the Department of Health. However, BioBank UK has called into question long-standing ethical principles, foremost among them informed consent. Traditional notions of consent were not designed for research on the scope or scale of population-based genetic studies. Moreover, protocols often differ based upon whether research will reveal clinically relevant information. These complications raise questions including the possibility and desirability of community consent , the thinness of information when the future use of samples is unknown , and the opportunity for re-consent. The chapter draws upon British and North American sources to evaluate options for the shaping of genetic epidemiology in an ethical way. Charlotte Augst, a genetic information project manager, also uses a comparative framework to explore the legal shaping of life science and technology in Britain and Germany. Both countries began debating embryo research and infertility treatments in the mid-1980s and regulating it in 1990. Although similar concerns about alienation, eugenics, the value of life, and women’s reproductive decisionmaking surfaced in both national debates, the legislatures produced different conclusions. The British Human Fertilisation and Embryology Act permits embryo    research, the treatment of unmarried women, and gamete donation and surrogacy. The German Embryo Protection Act outlaws these practices . Augst’s close reading of the parliamentary discourses suggests a struggle with the effects of modernization, understood as the occasionally conflicting and always ambivalent importance of processes of individualization and of scientific and technological progress. She concludes that this struggle cannot be resolved without contradictions, and yet both national “solutions” are based on a denial of the complex and contradictory effects of reproductive technologies as instances of modernization. Augst’s reading of parliamentary records allows us to understand how politics comes to terms with a controversial new...