Benefit-sharing: an inquiry regarding the meaning and limits of the concept in human genetic research

Simm, Kadri

doi:10.1186/1746-5354-1-2-29

Cited by 32 publications

(18 citation statements)

References 4 publications

(1 reference statement)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…There has been extensive discussion in the literature of the rhetorical value of benefit sharing and a range of justifications have been proffered which reflect the consequentialist, deontological and pragmatic considerations we have identified above (Berg, 2001;Knoppers, 2000;Merz, Magnus, Cho, & Caplan, 2002;Simm, 2005). Our motivation, however, is to consider turning the rhetoric into reality.…”

Section: A Benefit Sharing Model -The Creation Of New Obligations?mentioning

confidence: 99%

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

Haddow

Laurie

Cunningham‐Burley

et al. 2007

Social Science & Medicine

105

View full text Add to dashboard Cite

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.

show abstract

Section: A Benefit Sharing Model -The Creation Of New Obligations?mentioning

confidence: 99%

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

Haddow

Laurie

Cunningham‐Burley

et al. 2007

Social Science & Medicine

105

View full text Add to dashboard Cite

show abstract

“…The concept of benefit sharing in health related research, which at a minimum, entails the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, has recently emerged as an important strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research [1-3]. This concept requires consideration of a new ethical issue, the social value of research [4], by involving research participants and the researched communities in ensuring that global health research undertaken in resource poor settings is not exploitative and is responsive to the expressed needs of such settings.…”

Section: Introductionmentioning

confidence: 99%

Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study

et al. 2011

View full text Add to dashboard Cite

BackgroundThe concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.MethodsWe conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.ResultsOur study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.ConclusionThis study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings.

show abstract

“…How will public health goals be addressed in a commercial research infrastructure? (Simm, 2005); dangers of genetic research in general -will this type of research lead to eugenics? Do we want new types of risk knowledge?…”

Section: Informed Consent As An Organizationally Useful Battlegroundmentioning

confidence: 99%

The Ethics of Research Biobanking: A Critical Review of the Literature

Hoeyer

2008

Biotechnology and Genetic Engineering Reviews

101

View full text Add to dashboard Cite

Human tissue has been stored and used for research on a regular basis for more than 80 years. During the 1990s, collections of human tissue suddenly became framed as ethical problems in a process reflecting developments in genetic research intertwined with developments in patient rights and steps towards increased commercialization of research. This review describes the process of framing tissue storage as an ethical problem and the solutions proposed in the process. It gives an overview of the academic debate and relates this debate to empirical studies of donor attitudes and interests. It points to the clear discrepancy between the concerns of donors, legislators and ethicists. The academic debate and legislatory action tend to focus on informed consent, and most of the concerns that donors have remain unattended to.

show abstract

Benefit-sharing: an inquiry regarding the meaning and limits of the concept in human genetic research

Cited by 32 publications

References 4 publications

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

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

Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study

The Ethics of Research Biobanking: A Critical Review of the Literature

Contact Info

Product

Resources

About