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The complex art of benefit-sharing

 


In community-based participatory action programs (programs which have a research component but which are also focussed on community development and empowerment), it might be possible to identify a link between a research project and a benefit to the participating community. Over and above conducting the study, in research on domestic violence, studies have provided emotional and practical support for victims, offering information about, and organizing access to, formal and informal services, providing feedback to the study community and relevant agencies, and supporting or engaging in advocacy on behalf of abused (Usdin et al. 2000). Work on victims of state violence has also advocated for broader political change (Stanley 2012).

However, in other circumstances it may be far more likely that participants may contribute to research but gain very little direct or even no benefit from it. The lack of reciprocity may be particularly problematic if participants are drawn from vulnerable groups.

For example, members of poorer communities have a right to feel aggrieved if research undertaken in their communities is only likely to be of benefit to wealthier societies. This is most obviously the case where multinational pharmaceutical corporations trial drugs or procedures in the Global South that are in the end likely to be priced out of the reach of participant communities or which were never relevant to their needs. Not surprisingly, therefore, the concept of benefit-sharing has been most widely developed in discussions of health and genetic research.

In response, international agreements and statements related to biomedical research such as the Declaration of Helsinki (from 2000 onwards) and non-human genetic and bioprospecting research such as the legally-binding Convention on Biological Diversity (1992), formalised in the Nagoya Protocol (Convention on Biological Diversity, 2010), instituted obligations relating to benefit-sharing for projects that fell within their jurisdiction. These agreements recognised that:

Those who contribute to developments in science and technology ought to share in the benefits, so if those benefits are not shared with the contributors to scientific advancement, that advancement is exploitative. (Arnason and Schroeder, 2013, p. 21)

As a result, the Nagoya Protocol pointed to the principle that research projects should offer benefits to participants. Non-financial benefits might include: sharing research results; collaboration, cooperation and contribution in research and development programmes, education and training; institutional capacity-building; contributions to the local economy; research directed towards priority needs of the participating community; institutional and professional relationships that can arise from an access and benefit-sharing agreement and subsequent collaborative activities; livelihood security benefits; and, social recognition. It is easy to imagine how such benefits, in the context of biomedical research, can be applied to social research; or, at least, it would be if social researchers were funded at the same level as biomedical researchers.

Unfortunately, the art of benefit-sharing has proved to be complex.

First, it might not be straightforward to identify what constitutes a benefit, particularly at the beginning of a researcher’s engagement with a new community. In her recent critique of transnational Feminist researchers, Rajan (2018) portrayed some external attempts at intervening in support of women’s rights in the Global South as ‘unfairly patronizing, or alternatively… ill-advised and characterized by a lack of sufficient knowledge of local context and concerns’ (p.271).

Second, it may not always be easy to work out what a particular community might regard as a fair way of sharing benefits. Even those projects that have sought to implement formal benefit-sharing arrangements have struggled to achieve a just and equitable distribution of benefits. For example, there is evidence that women have been marginalized in the negotiation and implementation of benefit-sharing arrangements, despite (and indeed because of) their additional susceptibility to exploitation within vulnerable communities. In addition, it is possible that some benefits aimed at individual participants might undermine commitments to respond to injustice at a macro-level and might even cause intra-community conflict. For instance, providing a participant family with additional food in a village where food is scarce may cause resentment among neighbours.

Third, some disciplines are less likely than others to generate tangible benefits and, even if they can, researchers may not be able to assure that the intended benefits of a research project will flow to participants. They may be particularly powerless in the face of powerful institutions whose job it is to restrict the freedom of participants. Zion et al. (2010), for example, argued that researchers seeking to work on projects on self-harm by asylum seekers funded by the Australian Commonwealth government were likely to be compromised. As asylum seekers are subjected to indefinite mandatory detention in Australia, Zion and her colleagues concluded that even projects aimed at improving the mental wellbeing of detainees risk legitimizing a detention regime that inevitably breached human rights.

Finally, acceptance of the importance of benefit-sharing arrangements is not universal. In 2008, the United States effectively opted out of the provisions of the Declaration of Helsinki that relate to ensuring that research participants must be allowed access to tested clinical interventions that were found to be successful and that research in low and lower middle-income countries must be designed to benefit local communities. Even before that time, there was little evidence that Institutional Review Boards in the US were taking the requirement seriously (Macklin, 2004).

So, benefit-sharing offers a way of directing both the outcomes and the process of research towards the pursuit of global and social justice. Unfortunately, a broader range of disciplines need to do more to develop and share strategies of benefit-sharing before we can have confidence that it has found a place in across our research programs.

Acknowledgements:

This article further develops an argument that will appear in Israel, M. & Fozdar, F. (in press) The ethics of the study of ‘Social Problems’ . In Treviño, J. & Marvasti, A. (eds) Researching Social Problems. New York: Routledge.

Bibliography

Arnason, G. and Schroeder, D. (2013) Exploring Central Philosophical Concepts in Benefit Sharing: Vulnerability, Exploitation and Undue Inducement. In Schroeder, D. and Lucas, J.C. (eds.) Benefit Sharing: From Biodiversity to Human Genetics. Springer. pp.9-31

Convention on Biological Diversity (2010) Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity. http://www.cbd.int/abs/doc/protocol/nagoya-protocol-en.pdf

Macklin, R. (2004) Double Standards in Medical Research in Developing Countries. Cambridge: Cambridge University Press.

Rajan, H. (2018) ‘The Ethics of Transnational Feminist Research and Activism: An Argument for a More Comprehensive View’, Signs: Journal of Women in Culture and Society 43(2): 269-300.

Stanley, E. (2012) ‘Interviewing Victims of State Violence’ in Gadd, D., Karstedt, S. and Messner, S.F. (eds) The Sage Handbook of Criminological Research Methods. Sage: London. DOI: http://dx.doi.org/10.4135/9781446268285.n15

Usdin, S., Christfides, N., Malepe, L. and Aadielah, M. (2000) ‘The value of advocacy in promoting social change: implementing the new Domestic Violence Act in South Africa’, Reproductive Health Matters, 8(16): 55–65.

Zion, D., Briskman L. and Loff, B. (2010) ‘Returning to History: The Ethics of Researching Asylum Seeker Health in Australia’, The American Journal of Bioethics, 10(2): 48-56. DOI: 10.1080/15265160903469310

Contributor
Prof. Mark Israel
Senior consultant AHRECS – AHRECS Profile | mark.israel@ahrecs.com

This post may be cited as:
Israel M. (24 July 2018) The complex art of benefit-sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-complex-art-of-benefit-sharing

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