Literature DB >> 16025591

Public consultation in ethics: an experiment in representative ethics.

Michael M Burgess1.   

Abstract

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse set of moral experiences. Consultation must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groups tend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues.

Keywords:  Biomedical and Behavioral Research; Empirical Approach; Genetics and Reproduction

Mesh:

Year:  2004        PMID: 16025591     DOI: 10.1007/bf02448901

Source DB:  PubMed          Journal:  J Bioeth Inq        ISSN: 1176-7529            Impact factor:   1.352


  8 in total

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Authors:  M M Burgess; L d'Agincourt-Canning
Journal:  J Clin Ethics       Date:  2001

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Journal:  Kennedy Inst Ethics J       Date:  1995-09

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Review 5.  Getting down to cases: the revival of casuistry in bioethics.

Authors:  J D Arras
Journal:  J Med Philos       Date:  1991-02

6.  Public bioethics and publics: consensus, boundaries, and participation in biomedical science policy.

Authors:  Susan E Kelly
Journal:  Sci Technol Human Values       Date:  2003

7.  Judgment under Uncertainty: Heuristics and Biases.

Authors:  A Tversky; D Kahneman
Journal:  Science       Date:  1974-09-27       Impact factor: 47.728

8.  The tyranny of principles.

Authors:  S Toulmin
Journal:  Hastings Cent Rep       Date:  1981-12       Impact factor: 2.683

  8 in total
  9 in total

Review 1.  Democratising access to genetic services.

Authors:  Bryn Williams-Jones; Michael M Burgess
Journal:  Fam Cancer       Date:  2006       Impact factor: 2.375

2.  Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?

Authors:  Caron Molster; Susannah Maxwell; Leanne Youngs; Gaenor Kyne; Fiona Hope; Hugh Dawkins; Peter O'Leary
Journal:  Health Expect       Date:  2011-06-07       Impact factor: 3.377

3.  Community engagement about genetic variation research.

Authors:  Sharon F Terry; Kurt D Christensen; Susan Metosky; Gayle Rudofsky; Kathleen P Deignan; Hulda Martinez; Penelope Johnson-Moore; Toby Citrin
Journal:  Popul Health Manag       Date:  2011-08-04       Impact factor: 2.459

4.  The Dilemma of When to Stop Disease-Modifying Therapy in Multiple Sclerosis: A Narrative Review and Canadian Regional Reimbursement Policies.

Authors:  Katherine B Knox; Aman Saini; Michael C Levin
Journal:  Int J MS Care       Date:  2020 Mar-Apr

5.  Layperson Views about the Design and Evaluation of Decision Aids: A Public Deliberation.

Authors:  Peter H Schwartz; Kieran C O'Doherty; Colene Bentley; Karen K Schmidt; Michael M Burgess
Journal:  Med Decis Making       Date:  2021-04-05       Impact factor: 2.583

6.  Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.

Authors:  Vicki M Marsh; Dorcas M Kamuya; Albert M Mlamba; Thomas N Williams; Sassy S Molyneux
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7.  Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya: Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement.

Authors:  Irene Jao; Francis Kombe; Salim Mwalukore; Susan Bull; Michael Parker; Dorcas Kamuya; Sassy Molyneux; Vicki Marsh
Journal:  J Empir Res Hum Res Ethics       Date:  2015-07       Impact factor: 1.742

8.  Integrating stakeholder perspectives into the translation of cell-free fetal DNA testing for aneuploidy.

Authors:  Lauren C Sayres; Megan Allyse; Mildred K Cho
Journal:  Genome Med       Date:  2012-06-21       Impact factor: 11.117

9.  Research Stakeholders' Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations.

Authors:  Irene Jao; Francis Kombe; Salim Mwalukore; Susan Bull; Michael Parker; Dorcas Kamuya; Sassy Molyneux; Vicki Marsh
Journal:  PLoS One       Date:  2015-09-02       Impact factor: 3.240

  9 in total

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