The ethics of benefit sharing

Berg, K.

doi:10.1034/j.1399-0004.2001.590404.x

Cited by 27 publications

(23 citation statements)

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“…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

107

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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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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

107

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“…Some believe that it is unethical not to store samples and conduct previously unforeseen future studies, and that, since research participants donate specimens, there is no need for external control on what research is conducted on them as society will ultimately benefit [22]. There is a school of thought that supports the use of research using biological samples donated to generate patents and profits that should not be shared with participants [23-25]. And of course, the contrary view is held as well [26].…”

Section: Introductionmentioning

confidence: 99%

“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants

et al. 2014

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BackgroundThe use of biological samples in research raises a number of ethical issues in relation to consent, storage, export, benefit sharing and re-use of samples. Participant perspectives have been explored in North America and Europe, with only a few studies reported in Africa. The amount of research being conducted in Africa is growing exponentially with volumes of biological samples being exported from the African continent. In order to investigate the perspectives of African research participants, we conducted a study at research sites in the Western Cape and Gauteng, South Africa.MethodsData were collected using a semi-structured questionnaire that captured both quantitative and qualitative information at 6 research sites in South Africa. Interviews were conducted in English and Afrikaans. Data were analysed both quantitatively and qualitatively.ResultsOur study indicates that while the majority of participants were supportive of providing samples for research, serious concerns were voiced about future use, benefit sharing and export of samples. While researchers view the provision of biosamples as a donation, participants believe that they still have ownership rights and are therefore in favour of benefit sharing. Almost half of the participants expressed a desire to be re-contacted for consent for future use of their samples. Interesting opinions were expressed with respect to export of samples.ConclusionsEliciting participant perspectives is an important part of community engagement in research involving biological sample collection, export, storage and future use. A tiered consent process appears to be more acceptable to participants in this study. Eliciting opinions of researchers and research ethics committee (REC) members would contribute multiple perspectives. Further research is required to interrogate the concept of ownership and the consent process in research involving biological samples.

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“…Participation in global health research is considered altruistic, as research participation is viewed as an individual's contribution to the advancement of medicine and service to other patients 1 2. While this altruistic notion is still important in medical research, there is a growing emphasis on the need for research participants and communities to accrue some benefits for participating in research.…”

Section: Introductionmentioning

confidence: 99%

Viewing benefit sharing in global health research through the lens of Aristotelian justice

Dauda¹,

Dierickx²

2016

J Med Ethics

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The ethics of benefit sharing has been a topical issue in global health research in resource-limited countries. It pertains to the distribution of goods, benefits and advantages to the research participants, communities and countries that are involved in research. One of the nuances in benefit sharing is the ethical justification on which the concept should be based. Extensive literature outlining the different principles underlying benefit sharing is available. The purpose of this paper is to examine the proposed principles using Aristotelian principles of justice. The paper assesses the central idea of Aristotelian justice and applies and evaluates this idea to benefit sharing in research, especially when commercial research sponsors conduct research in resource-limited countries. Two categories of Aristotelian justice-universal and particular-were examined and their contribution to the benefit-sharing discourse assessed. On the one hand, benefit sharing in accordance with universal justice requires that for-profit research sponsors obey the legal regulations and international standards set for benefit sharing. On the other hand, benefit sharing in accordance with particular justice transcends obeying legal requirements and standards to a realm of acting in an ethically accepted manner. Accordingly, the paper further examines three perspectives of particular justice and develops ethical justification for benefit sharing in global health research. As Aristotelian justice is still relevant to the contemporary discourse on justice, this paper broadens the ethical justifications of benefit sharing in global health research.

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The ethics of benefit sharing

Cited by 27 publications

References 1 publication

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

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

“It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants

Viewing benefit sharing in global health research through the lens of Aristotelian justice

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