Sharing the benefits of genetic research

Schroeder, Doris; Ladikas, Miltos; Schüklenk, Udo; Díaz, Carolina Lasén; Kleinsmidt, Anita; Alvarez-Castillo, Fatima; Feinholz, Dafna

doi:10.1136/bmj.331.7529.1351

Cited by 6 publications

(5 citation statements)

References 4 publications

(1 reference statement)

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“…Governmental institutions, in particular, must clearly convey a reassuring message that biobanks are only to be used for research-related purposes. We thus agree that ‘the research community should make a concerted effort in cooperation with national governments to devise a legally binding framework for sharing the benefits of human genetics research that is based on equity, justice, and the spirit of convention’ 25. How this should be done in detail, in order to uphold these values necessary to maintain solidarity and trust, is hopefully the next area of debate and future study.…”

Section: Discussionmentioning

confidence: 99%

Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

et al. 2010

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Section: Discussionmentioning

confidence: 99%

Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

et al. 2010

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“…5 Exactly how the Schroeder definition can guide the understanding of benefit sharing in genomics research remains unclear, partly because it is uncertain what constitutes benefits in human genomics research and, by extension, what needs to be shared. 6 These uncertain-ties may explain why, compared to other ethical, legal, and social issues regarding genomics research in sub-Saharan Africa, benefit sharing has received little attention. In Kenya, a qualitative study on benefits in health research showed that community members believed that tokens of appreciation, study-related educational materials, and medical benefits that could outlive the specific research project were considered possible benefits of global health research projects.…”

Section: E R H E R Hmentioning

confidence: 99%

Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub‐Saharan Africa

Munung

Vries

2020

Ethics & Human Research

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Benefit sharing is an ethical issue that underscores the need to find a balance between access to genetic resources and the provision of fair benefits in exchange for access. The Human Genome Organisation (HUGO) is one of the few initiatives to have engaged with the topic of benefit sharing in human genomics. However, there is a lack of clarity on what benefit sharing entails in human genomics research and how it could be implemented in practice. This paper reports on a qualitative study that explored the views and expectations of benefit sharing by a group of genomics researchers in sub-Saharan Africa. Overall, while there was little awareness of benefit sharing among the researchers, there was support for benefit sharing in human genetics, and this was based on principles of fairness, solidarity, and reciprocity. This in-depth explorative study demonstrates the need for genomics research consortia in Africa to have open discussions on benefit sharing and to develop ethics frameworks for benefit sharing in population genomics studies in Africa. HUGO's statement on benefit sharing and the Nagoya Protocol could provide guidance.

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“…15 This suggestion aroused strong opposition from a group of industrialised countries led by the US. The issue remains unresolved after the recent WTO meeting in Hong Kong 16 and is the main hindrance to realising the objectives of the CBD. 17 Despite the practical difficulties in realising the objectives of the CBD, it is possible to add a contribution from ethics to our definition for non-human resources.…”

Section: Costa Ricamentioning

confidence: 99%

Benefit sharing: it’s time for a definition: Table 1

Schroeder

2007

J Med Ethics

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Benefit sharing has been a recurrent theme in international debates for the past two decades. However, despite its prominence in law, medical ethics and political philosophy, the concept has never been satisfactorily defined. In this conceptual paper, a definition that combines current legal guidelines with input from ethics debates is developed. Philosophers like boxes; protective casings into which they can put concisely-defined concepts. Autonomy is the human capacity for self-determination; beneficence denotes the virtue of good deeds, coercion is the intentional threat of harm and so on. What about benefit sharing? Does the concept have a box and are the contents clearly defined? The answer to this question has to be no. The concept of benefit sharing is almost unique in that various disciplines use it regularly without precise definitions. In this article, a definition for benefit sharing is provided, to eliminate unnecessary ambiguity.

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Sharing the benefits of genetic research

Cited by 6 publications

References 4 publications

Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study

Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub‐Saharan Africa

Benefit sharing: it’s time for a definition: Table 1

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