Abstract
Current developments in genetics and genomics entail a number of changes and challenges for society as new knowledge and technology become common in the clinical setting and in society at large. The relationship between genetics and ethics has been much discussed during the last decade, while the relationship between genetics and the political arena—with terms such as rights, distribution, expertise, participation and democracy—has been less considered. The purpose of this article is to demonstrate the connection between genetics and democracy. In order to do this, we delineate a notion of democracy that incorporates process as well as substance values. On the basis of this notion of democracy and on claims of democratisation in the science and technology literature, we argue for the importance of considering genetic issues in a democratic manner. Having established this connection between genetics and democracy, we discuss this relation in three different contexts where the relationship between genetics and democracy becomes truly salient: the role of expertise, science and public participation, and individual responsibility and distributive justice. As developments within genetics and genomics advance with great speed, the importance and use of genetic knowledge within society can be expected to grow. However, this expanding societal importance of genetics might ultimately involve, interact with, or even confront important aspects within democratic rule and democratic decision-making. Moreover, we argue that the societal importance of genetic development makes it crucial to consider not only decision-making processes, but also the policy outcomes of these processes. This argument supports our process and substance notion of democracy, which implies that public participation, as a process value, must be complemented with a focus on the effects of policy decisions on democratic values such as distributive justice.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
In line with Brettschneider, we contend that government ‘of’ the people refers to the authorisation of the people, that government ‘by’ the people refers to the people's status as rulers and that government ‘for’ the people points at the content of decisions: “While government ‘by’ the people is a claim about procedures, government ‘for’ the people limits what counts as a democratic outcome” (Brettschneider 2006, p. 269).
Compulsory sterilisation in the twentieth century is no doubt an extreme example of biopower or ‘strategies for the governing of life’ (Rabinow and Rose 2006). However, many would argue that contemporary genetic techniques and policies are nearly as extreme in terms of constituting life (c.f. Jasanoff 2011, Rabinow and Rose 2006).
The so-called ‘knowledge deficit’ model (see e.g. Brunk 2006)
The concept of ‘lay expertise’ (see e.g. Fischer 2009) refers to the local and/or experience-based expert knowledge possessed by people who are ‘lay’ in relation to the current expert area.
References
Aldred MJ, Crawford PJM, Savariraya R, Savulescu J (2003) It's only teeth—are there limits to genetic testing? Clin Gen 63:333–339
Boddington P, Clarke A (2004) It's only teeth—limits to genetic testing? A response to Aldred Crawford, Savarirayan, and Savulescu. Clin Gen 66:562–564
Bonnicksen, A (2002) Crafting a Cloning Policy: From Dolly to Stem Cells. Washington, DC: Georgetown University Press
Boswell C (2009) The political uses of expert knowledge: immigration policy and social research. Cambridge University Press, Cambridge
Brettschneider C (2006) The value theory of democracy. Polit Philos Econ 5(3):259–278
Brighouse H (1997) Political equality in justice as fairness. Philos Stud 86(2):155–184
Broberg G, Tydén M (1996) Eugenics in Sweden: efficient care. In: Broberg G, Roll-Hansen N (eds) Eugenetics and the welfare state: sterlization policy in Denmark, Sweden, Norway, and Finland. Michigan State University Press, East Lansing
Brown N (2005) Shifting tenses: reconnecting regimes of truth and hope. Configurations 13(3):331–355
Brunk CG (2006) Public knowledge, public trust: understanding the ‘knowledge deficit’. Comm Gen 9(3):178–183
Buchanan A, Brock WD, Daniels N, Wikler D (2000) From chance to choice: genetics and justice. Cambridge University Press, Cambridge
Burke W (2003) Genomics as a probe for disease biology. N Engl J Med 349:969–974
Collins H, Evans R (2002) The third wave of science studies: studies of expertise and experience. Soc Stud Sci 32(2):235–296
Cornel MC, van El CG, Dondorp WJ (2012) The promises of genomic screening: building a governance infrastructure. J Comm Gen 3(22):73–78, Special Issue: Genetics and Democracy
Cunningham-Burley S (2006) Public knowledge and public trust. Comm Gen 9(3):204–210
Denier Y (2007) Efficiency, justice and care—philosophical reflections on scarcity in health care. Springer, Dordrecht
Durant D (2011) Models of democracy in social studies of science. Soc Stud Sci 41(5):691–714
Dahl RA (1998) On democracy. Yale University Press, New Haven
Dahl RA (1989) Democracy and its critics. Yale University Press, New Haven
Delkeskamp-Hayes C (2005) Societal consensus and the problem of consent: refocusing the problem of ethics expertise in liberal democracies. In: Rasmussen L (ed) Ethics expertise: history, contemporary perspectives, and applications. Springer, Dordrecht, pp 139–163
Evans JH (2002) Playing God: human genetic engineering and the rationalization of public bioethical debate. University of Chicago Press, Chicago
Fischer F (2009) Democracy and expertise: reorienting policy inquiry. Oxford University Press, Oxford
Gottweis H, Lauss G (2012) Biobank governance: heterogeneous modes of ordering and democratization. J Commun Genet 3(2):61–72
Gottweis H, Petersen A (2008) Biobanks and governance: an introduction. In: Gottweis H, Petersen A (eds) Biobanks—governance in comparative perspective. Routledge, London, pp 3–21
Heath D, Rapp R, Taussig KS (2004) Genetic citizenship. In: Nugent D, Vincent J (eds) A companion to the anthropology of politics. Blackwell, Malden, pp 152–166
Hedgecoe A (2008) From resistance to usefulness: sociology and the clinical use of genetic tests. Biosocieties 3:183–194
Hedlund M (2012) Epigenetic responsibility. Medicine studies 3(2):171–183, special issue Responsibility in biomedical practices. Published online first doi: 10.1007/s12376-011-0072-6O
Hedlund M (2011) Why are expert committee deliberations in need of democratic control. Conference paper, European Consortium for Political Research Conference, Reykjavik, August 25–27.
Held D (2006) Models of democracy, 3rd edn. Stanford University Press, Palo Alto
Howard HC, Borry P (2012) Is there a doctor in the house? The presence of physicians in the direct-to-consumer genetic testing context. J Community Genet 3(2):105–112
Hyland JL (1995) Democratic theory: the philosophical foundations. Manchester University Press, Manchester
Jasanoff S (2011) Introduction: rewriting life, reframing rights. In: Jasanoff S (ed) Reframing rights: bioconstitutionalism in the genetic age. MIT Press, Cambridge, pp 1–27
Jasanoff S (2006) Designs on nature: science and democracy in Europe and the United States. Princeton University Press, Princeton
Jasanoff S (2003) Breaking the waves in science studies. Soc Stud Sci 33(3):389–400
Jasanoff S (1997) Civilization and madness: the great BSE scare of 1996. Public Underst Sci 6(3):221–232
Jasanoff S (1990) The fifth branch: science advisers as policymakers. Harvard University Press, Cambridge
Lemke T (2004) Dispositions and determinism—genetics diagnostics in risk society. Sociol Rev 52(4):550–566
Liberatore A, Funtowicz S (2003) ‘Democratising’ expertise, ‘expertising’ democracy: What does this mean, and why bother? Sci Public Policy 30(3):146–150
Lock M (2008) Biosociality and susceptibility genes: a cautionary tale. In: Gibbon S, Novas C (eds) Biosocialities, genetics and the social sciences. Routledge, London, pp 56–78
Miller FA, Begbie ME, Giacomini M, Ahern C, Harvey EA (2006) Redefining disease? The nostalgic implications of molecular genetic knowledge. Perspect Biol Med 49(1):99–114
Nelis A, de Vries G, Hagendijk R (2007) Patients as public in ethics debates—interpreting the role of patients' organisations in democracy. In: Atkinson P, Glasner P, Greenslade H (eds) New genetics, new identities. Routledge, London, pp 28–43
Nordahl-Svendsen M, Koch L (2006) Genetics and prevention: a policy in the making. New Genet Soc 25(1):51–68
Novas C (2006) The political economy of hope: patient's organizations. Sci Biovalue, BioSocieties 1:289–305
OMIM (Online Mendelian Inheritance in Man). At: www.omim.org. Accessed June 12, 2012.
Parker RD (2000) Power to the voters. HarvJ Law & Publ Policy 24(1):179–189
Post, R (2006) Democracy and Equality. The Annals of the American Academy of Political and Social Science 603(1):24–36
Rabeharisoa V, Callon M (2004) Patients and scientists in French muscular dystrophy research. In: Jasanoff S (ed) States of knowledge—the co-production of science and social order. Routledge, London, pp 142–160
Rabinow P, Rose N (2006) Biopower Today. Biosocieties 1:195–217
Rayner S (2003) Democracy in the age of assessment: reflections on the roles of expertise and democracy in public-sector decision making. Sci Publ Policy 30(3):163–170
Rochefort, DA, Cobb RW (1993) Problem Definition, Agenda Access, and Policy Choice. Policy Studies Journal 21(1):56–71
Rose N (2007) The politics of life itself: biomedicine, power, and subjectivity in the twenty-first century. Princeton University Press, Princeton
Sen A (1996) On the status of equality. Polit Theory 24(3):394–400
Silverman C (2008) Brains, pedigrees, and promises. In: Gibbon S, Novas C (eds) Biosocialities, genetics and the social sciences. Routledge, London, pp 38–55
Tong R (1991) The epistemology and ethics of consensus: uses and misuses of ‘ethical’ expertise. J Med Philos 16:409–426
Turner PS (2003) Liberal democracy 3.0: civil society in an age of experts. Sage, London
van El CG, Pieters T, Cornel M (2012) Genetic screening and democracy: lessons from debating genetic screening criteria in the Netherlands. J Community Genet 3(2):79–90
Weingart P (1999) Scientific expertise and political accountability: paradoxes of science in politics. Sci Publ Policy 26(3):151–161
Weindling P (1999) International eugenics: Swedish sterilisation in context. Scand J Hist 24(2):179–197
Wellerstein A (2011) States of eugenics: institutions and practices in compulsory sterilization in California. In: Jasanoff S (ed) Reframing rights: bioconstitutionalism in the genetic age. MIT Press, Cambridge, pp 29–58
Wexler A (1995) Mapping fate—a memoir of family, risk, and genetic research. University of California Press, Berkley
Wynne B (2006) Public engagement as a means of restoring public trust in science—hitting the notes, but missing the music? Community Genet 9(3):211–220
Wynne B (2003) Seasick on the third wave: subverting the hegemony of propositionalism. Soc Stud Sci 33(3):401–417
Wynne B (1996) May the sheep safely graze? A reflexive view of the expert–lay knowledge divide. In: Lash S, Szerszynski B, Wynne B (eds) Risk, environment and modernity. Sage, London, pp 44–83
Young IM (2006) Responsibility and global justice: a social connection model. Soc Philos Policy 23(1):102–130
Zinkernagel RM (1997) Gene technology and democracy. Science 278(5341):1207
Author information
Authors and Affiliations
Corresponding author
Additional information
Special Issue: Genetics and Democracy
Niclas Hagen and Maria Hedlund have contributed in equal amount to the text.
Rights and permissions
About this article
Cite this article
Hagen, N., Hedlund, M., Lundin, S. et al. Genetics and democracy—what is the issue?. J Community Genet 4, 181–188 (2013). https://doi.org/10.1007/s12687-012-0109-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12687-012-0109-x