Literature DB >> 17050056

Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal.

Gillian Haddow1, Graeme Laurie, Sarah Cunningham-Burley, Kathryn G Hunter.   

Abstract

In recent years, there has been a rise in the creation of DNA databases promising a range of health benefits to individuals and populations. This development has been accompanied by an interest in, and concern for the ethical, legal and social aspects of such collections. In terms of policy solutions, much of the focus of these debates has been on issues of consent, confidentiality and research governance. However, there are broader concerns, such as those associated with commercialisation, which cannot be adequately addressed by these foci. In this article, we focus on the health-wealth benefits that DNA databases promise by considering the views of 10 focus groups on Generation Scotland, Scotland's first national genetic database. As in previous studies, our qualitative research on public/s and stakeholders' views of DNA databases show the prospect of utilising donated samples and information derived for wealth-related ends (i.e. for private profit), irrespective of whether there is an associated health-related benefit, arouses considerable reaction. While health-wealth benefits are not mutually exclusive ideals, the tendency has been to cast 'public' benefits as exclusively health-related, while 'private' commercial benefits for funders and/or researchers are held out as a necessary pay-off. We argue for a less polarised approach that reconsiders what is meant by 'public benefits' and questions the exclusivity of commercial interests. We believe accommodation can be achieved via the mobilisation of a grass roots solution known as 'benefit-sharing' or a 'profit pay-off'. We propose a sociologically informed model that has a pragmatic, legal framework, which responds seriously to public concerns.

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Year:  2006        PMID: 17050056     DOI: 10.1016/j.socscimed.2006.08.028

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  29 in total

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4.  Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.

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5.  Ethically sustainable governance in the biobanking of eggs and embryos for research.

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6.  Attitudes towards transfers of human tissue samples across borders: an international survey of researchers and policy makers in five countries.

Authors:  Xinqing Zhang; Kenji Matsui; Benjamin Krohmal; Alaa Abou Zeid; Vasantha Muthuswamy; Young Mo Koo; Yoshikuni Kita; Reidar K Lie
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7.  Privacy and property in the biobank context.

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Journal:  HEC Forum       Date:  2010-09

8.  Asking the right questions: views on genetic variation research among black and white research participants.

Authors:  Jada Bussey-Jones; Gail Henderson; Joanne Garrett; Mairead Moloney; Connie Blumenthal; Giselle Corbie-Smith
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9.  Ethical data release in genome-wide association studies in developing countries.

Authors:  Michael Parker; Susan J Bull; Jantina de Vries; Tsiri Agbenyega; Ogobara K Doumbo; Dominic P Kwiatkowski
Journal:  PLoS Med       Date:  2009-11-24       Impact factor: 11.069

10.  Planning for translational research in genomics.

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Journal:  Genome Med       Date:  2009-09-29       Impact factor: 11.117

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