Beyond Consent: Respect for Community in Genetic Research

Abstract

Paralleling the broadening of scientific thought occasioned by the human genome project, calls have been sounded to expand research ethics to include a principle of ‘respect for community’ in genetic research. The principle is responsive to a history of genetic research that has harmed some groups. The principle recognises that communities hold dignitary interests, values and rights. For such reasons, it has gained recognition in national and international health research ethics norms. To help translate respect for community into research practice, we identify selected ethics elements and research approaches, including: collaborative community research; jointly defining research priorities and questions; informed consent; joint interpretation and dissemination of results; community ethics deliberations and fair benefit sharing. Implementing such elements presents challenges that merit interdisciplinary study, pluralistic debate and analysis. With such work, we project a future with fuller recognition of respect for community as an ethical principle and duty in human research ethics.

Key Concepts:

  • Evolving research ethics requires protection of communities, in addition to protection of individuals – this also applies to genetic research.

  • Protection of communities supports the ethical concept of respect for communities.

  • National and international research ethics guidelines support these concepts.

  • Respect for communities can be achieved through researchers using collaborative research with communities.

  • Collaborative research uses principles and practice from both participatory research and community‐engaged research.

  • Collaborative research maximises benefits and minimises harms for communities and groups within the communities.

  • Collaborative research impacts researchers, communities, institutional and community ethics boards and those publishing the results.

Keywords: respect; ethical principles; research ethics; community engagement; participatory research; community‐based participatory research; consent; biobanking; genetics; international ethical standards

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Web Link

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Jones, Derek J, Bush, Paula L, and Macaulay, Ann C(May 2014) Beyond Consent: Respect for Community in Genetic Research. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005179.pub2]