The ethics of data sharing and biobanking in health research

Abstract

The importance of data sharing and biobanking are increasingly being recognised in global health research. Such practices are perceived to have the potential to promote science by maximising the utility of data and samples. However, they also raise ethical challenges which can be exacerbated by existing disparities in power, infrastructure and capacity. The Global Forum on Bioethics in Research (GFBR) convened in Stellenbosch, South Africa in November 2018, to explore the ethics of data sharing and biobanking in health research. Ninety-five participants from 35 countries drew on case studies and their experiences with sharing in their discussion of issues relating to respecting research participants and communities, promoting equitable sharing, and international and national approaches to governing data sharing and biobanking. In this editorial we will briefly review insights relating to each of these three themes.

What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives

“… 19 53 Where this was not possible, stakeholders concluded that benefits should at least be shared with originating communities by making the results of secondary analyses available to local researchers, communities and health ministries. 58 60 63 Some community representatives were supportive of health benefits accruing to the wider public, rather than directly back to their communities. 19 This was in recognition of the fact that health research data, especially when publicly funded, constitutes a public good.…”

“…31 50 51 62 63 In some LMIC settings, there is a lack of robust regulatory and governance structures to support equitable data sharing. 58 Existing ethical frameworks and case studies were thought to primarily address HIC contexts and did not reflect the difficulties LMIC researchers faced. 53 A lack of enforceable agreements leaves LMIC researchers exposed to exploitation and fails to safeguard participants from harms.…”

Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research

“…Attitudes regarding engaging the community in the practices of a biobank. identified by others as challenges for biobank research in LMICs (Barchi et al, 2015;Bull and Bhagwandin, 2020;Ezzat et al, 2022;Nansumba et al, 2019;Yakubu et al, 2018). Bull and Bhagwandin (2020) maintain that failure to provide participants with necessary information regarding genetic research threatens the protection of participants, fails to respect persons, and can compromise trust in relationships.…”

“…identified by others as challenges for biobank research in LMICs (Barchi et al, 2015;Bull and Bhagwandin, 2020;Ezzat et al, 2022;Nansumba et al, 2019;Yakubu et al, 2018). Bull and Bhagwandin (2020) maintain that failure to provide participants with necessary information regarding genetic research threatens the protection of participants, fails to respect persons, and can compromise trust in relationships. Regarding the significance of trust, Ngwenya et al (2020) concluded that participation in biobank research is based on trust, regardless of the purposes of the study, especially in communities with high rates of poverty and illiteracy.…”

“…The nature of biospecimen and data-sharing agreements (MTAs and DTAs) also present challenges (Mahomed and Labuschaigne, 2019). Participants from LMICs in a recent global forum agreed that while more efforts are needed to encourage data sharing, international guidelines are necessary to protect the interests of LMICs (Bull and Bhagwandin, 2020).…”