Moral agendas for genomics: How to find the blind spots?

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Volumn 16, Issue 1, 2008, Pages 117-135

  Van der Weele, Cor ^a  

^a WAGENINGEN UNIVERSITY   (Netherlands)

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[No Author keywords available]

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EID: 68149162195     PISSN: 10631801     EISSN: 10806520     Source Type: Journal    
DOI: 10.1353/con.0.0042     Document Type: Article

References (37)

1. I see such plurality as an important characteristic of a lingua democratica. The research program "Towards a lingua democratica for public debate on genomics," of which I am a member, aims to characterize interaction-prone ways to use language in public debate. It is subsidized by the Netherlands Organization for Scientific Research (NWO).
2. Arno Wouters, ELSA Onderzoek in Nederland (Nijmegen: Centre for Society and Genomics, 2005).
3. D. Avard, L. M. Bucci, B. Coly, and A. Saginur, Review of Research in Canada and the United States and Synthesis of Key Informants Views (Montreal: ERA-SAGE Research Area on Ethical, Legal, and Social Aspects of Human Genomics, 2006).
4. Wouters, ELSA Onderzoek in Nederland (above, n. 2), p. 28.
5. Ibid., p. 31.
6. Ibid., p. 32.
7. Avard et al., Review of Research (above, n. 3), p. 15.
8. Ibid., p. 33.
9. Ibid. "This summary raises many further questions. Firstly, what are the 'real' emerging issues? What is the role of key informants, the public, and academic leaders in establishing the direction of research? Is the GE LS community doing enough to raise awareness about their research among policy makers, health professionals, researchers and the public? Is there enough integration of GE LS research into health services and policy development? Has funding of GE LS research yielded acceptable returns on investment, i.e., significantly enhanced our understanding of GE LS issues? Has public/private co-funding helped advance GE LS research in Canada and North America? How can sectors such as universities, charities, professional associations, industry, and provincial governments contribute to future GE LS research in Canada? Can these sectors work more closely to create the optimum environment for GE LS research? Finally, will genomics play a critical role in non-medical fields such as immigration, adoption, insurance, schools, and the workplace? Research in these areas is lacking."
10. For an overview of theoretical backgrounds of agenda setting and framing, see Dietram A. Scheufele, "Agenda-setting, Priming, and Framing Revisited: Another Look at Cognitive Effects of Political Communication," Mass Communication and Society 3 (2000): 297-316.
11. The differences are important for some purposes, but in all cases, technology is the starting point. The European emphasis on aspects instead of implications is at least partly meant to move the moral agenda more "upstream"; this change is inspired by the democratizing frame (see below).
12. Francis S. Collins, Eric D. Green, Alan E. Gutmacher, and Mark S. Guyer, on behalf of the U.S. National Human Genome Research Institute, "A Vision for the Future of Genomics Research: A Blueprint for the Genomic Era," Nature 422 (2003): 835-847.
13. Ibid., p. 836.
14. Ibid., p. 835.
15. Ibid., p. 847.
16. James Wilsdon, Brian Wynne, and Jack Stilgoe, The Public Value of Science; or How to Ensure That Science Really Matters (London: Demos, 2005).
17. Ibid., p. 18.
18. Ibid., p. 23.
19. Ibid., p. 33.
20. Ibid., p. 38.
21. R. Jackson, F. Barbagello, and H. Haste, "Strengths of Public Dialogue on Sciencerelated Issues," Critical Review of International Social and Political Philosophy 8:3 (2005).
22. Peter Singer and Abdallah Daar, "Harnessing Genomics and Biotechnology to Improve Global Health Equity," Science 294 (2001): 87-89.
23. Ibid., p. 87.
24. Ibid., p. 88.
25. In genomics research, global problems of hunger, disease, and inequality are also used as sweeping justifications of scientific progress. There is a great difference, how ever, between moral agendas that start from such problems and painstakingly look for relevant scientific contributions, and agendas that are primarily arguing for scientific progress, using the solution of global problems in the indistinct future as one of the legitimations. In many contexts, it is not very hard to see where the priorities are, though there may be cases of confusion.
26. It will be clear by now that ELSI can be used in both a narrow or a broad sense. In a narrow sense, it is the frame I associate with a specific way of thinking about relations between ethics and society, in which ethics is concerned with the implications or applications of science. In the broad sense, it is simply shorthand for the "moral agenda for genomics," and it may include elements of each of the three narrow frames on science-ethics relations. Wouters and Avard and colleagues deal with ELSI in the broad sense, while my intention is to show that ELSI in the broad sense is in fact dominated by ELSI in the narrow sense. Indeed, the great majority of projects in both inventories do ask typically narrow ELSI questions. For the remainder of this essay, I will use ELSI in the narrow sense.
27. Wilsdon, Wynne, and Stilgoe, Public Value of Science (above, n. 16), p. 38.
28. Part of the force of this perspective can be found on other scales as well; enormous discrepancies exist within nations or even within cities.
29. Dick Scherpenzeel Stichting, Het Vergeten Verhaal (Hilversum, 2006), www.hetvergetenverhaal.nl.
30. Leendert van der Valk, "De Nederlandse Correspondenten: Witte Vlek in Afrika, Azië en Arabische Wereld Populairder," De Nieuwe Reporter (2006), www.denieuwereporter.nl/?p=494.
31. Volkert Beekman and Cor van der Weele, Naar een Gereedschapskist voor Constructieve Ethiek (Den Haag: LEI, 2004).
32. Edward Woodhouse, David Hess, Steve Breyman, and Brian Martin, "Science Studies and Activism: Possibilities and Problems for Reconstructivist Agendas," Social Studies of Science 32:2 (2002): 297-319, quote on p. 303. I owe this example to my colleague Henk van den Belt.
33. Neglected diseases primarily affect the developing world and are therefore not commercially interesting. These include malaria, leishmaniasis, dengue fever, and others.
34. Mary Moran, Anne-Laura Ropars, Javier Guzman, José Diaz, and Christopher Garrison, The New Landscape of Neglected-Disease Drug Development (London: Wellcome Trust, 2005).
35. Ibid., p. 6.
36. The Wellcome Trust calls the organizations that take responsibility for the development of the drugs Public-Private Partnerships (PPPs), but this is only for want of a better term, they say, because the organizations are not really PPPs, typically having neither public funding nor private partners. They are public organizations that use mainly philanthropic funds (the Gates Foundation is the major one) to manage the projects and to involve the right partners at the right place and time. Their function is primarily one of integrating and coordinating multiple industrial, academic, and other public partners along the trajectory, including small as well as large industrial corporations. The new situation exposes a new gap-namely, between policy and reality, as policy is still designed to encourage companies to take up later-stage clinical development for these drugs, which, given the high costs and risks, turns out to be extremely unattractive for private companies, even ones with subsides. For these stages, according to the Wellcome Trust report, public funds should be set up, to be managed by the new PPPs.
37. Laurie Garrett, "The Challenge of Global Health," Foreign Affairs 86:1 (2007): 14-38. According to Garrett, the basic goals to focus on are not specific diseases, but rather increased maternal survival and an increase of overall life expectancy (p. 32).