Abstract
BackgroundThe practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN Consortium, one of the first international collaborative genomics research projects in Africa.MethodsWe conducted a study in three MalariaGEN project sites in Kenya, the Gambia, and the United Kingdom. The study entailed analysis of project documents and 49 semi-structured interviews with fieldworkers, researchers and ethics committee members.ResultsConcerns about how best to address the potential for harm to ethnic groups in MalariaGEN crystallised in discussions about the development of a data sharing policy. Particularly concerning for researchers was how best to manage the sharing of genomic data outside of the original collaboration. Within MalariaGEN, genomic data is accompanied by information about the locations of sample collection, the limitations of consent and ethics approval, and the values and relations that accompanied sample collection. For interviewees, this information and context were of important ethical value in safeguarding against harmful uses of data, but is not customarily shared with secondary data users. This challenged the ability of primary researchers to protect against harmful uses of ‘their’ data.ConclusionWe identified three protective mechanisms – trust, the existence of a shared morality, and detailed contextual understanding – which together might play an important role in preventing the use of genomic data in ways that could harm the ethnic groups included in the study. We suggest that the current practice of sharing of datasets as isolated objects rather than as embedded within a particular scientific culture, without regard for the normative context within which samples were collected, may cause ethical tensions to emerge that could have been prevented or addressed had the ‘ethical metadata’ that accompanies genomic data also been shared.
Highlights
The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science
This discussion paper was circulated to funders, MalariaGEN principal investigators, and ethics committees in Africa, Asia and Europe that had approved the MalariaGEN study
Our analysis showed that the ultimate decision by MalariaGEN to adopt a ‘managed’ approach to data access originated from a desire to exclude the possibility of harm to ethnic groups that might have resulted from the unrestricted release of genomic data
Summary
The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. Genomic studies generate vast amounts of data that are investigated for significant associations between disease phenotype and genetic variants, following a wider transition in science from hypothesis-driven to data-driven research. Characteristic of this development is the generation of large, often publicly available datasets, the absence of specific hypotheses and the reliance on bioinformatics infrastructure to manage and analyse these. The need for very considerable sample numbers to allow for the generation of sufficiently large datasets has meant that such research is increasingly collaborative in nature. When genomics research happens in collaborations, data and samples are usually shared between collaborators. The sharing of data is expected to reduce the number of people from whom samples need to be collected afresh for research – reducing the possibility for adverse events
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