Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa

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dc.contributor.authorde Vries, Jantina
dc.contributor.authorWilliams, Thomas N
dc.contributor.authorBojang, Kalifa
dc.contributor.authorKwiatkowski, Dominic P
dc.contributor.authorFitzpatrick, Raymond
dc.contributor.authorParker, Michael
dc.date.accessioned2015-01-16T17:12:05Z
dc.date.available2015-01-16T17:12:05Z
dc.date.issued2014-08-13
dc.date.updated2015-01-15T17:52:38Z
dc.description.abstractBackground The 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. Methods We 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. Results Concerns 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. Conclusion We 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.en_ZA
dc.identifier.apacitationde Vries, J., Williams, T. N., Bojang, K., Kwiatkowski, D. P., Fitzpatrick, R., & Parker, M. (2014). Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa. <i>BMC Medical Ethics</i>, http://hdl.handle.net/11427/12254en_ZA
dc.identifier.chicagocitationde Vries, Jantina, Thomas N Williams, Kalifa Bojang, Dominic P Kwiatkowski, Raymond Fitzpatrick, and Michael Parker "Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa." <i>BMC Medical Ethics</i> (2014) http://hdl.handle.net/11427/12254en_ZA
dc.identifier.citationBMC Medical Ethics. 2014 Aug 13;15(1):62en_ZA
dc.identifier.issn1471-2148en_ZA
dc.identifier.ris TY - Journal Article AU - de Vries, Jantina AU - Williams, Thomas N AU - Bojang, Kalifa AU - Kwiatkowski, Dominic P AU - Fitzpatrick, Raymond AU - Parker, Michael AB - Background The 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. Methods We 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. Results Concerns 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. Conclusion We 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. DA - 2014-08-13 DB - OpenUCT DO - 10.1186/1472-6939-15-62 DP - University of Cape Town J1 - BMC Medical Ethics LK - https://open.uct.ac.za PB - University of Cape Town PY - 2014 SM - 1471-2148 T1 - Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa TI - Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa UR - http://hdl.handle.net/11427/12254 ER - en_ZA
dc.identifier.urihttp://dx.doi.org/10.1186/1472-6939-15-62
dc.identifier.urihttp://hdl.handle.net/11427/12254
dc.identifier.vancouvercitationde Vries J, Williams TN, Bojang K, Kwiatkowski DP, Fitzpatrick R, Parker M. Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa. BMC Medical Ethics. 2014; http://hdl.handle.net/11427/12254.en_ZA
dc.languageengen_ZA
dc.language.rfc3066en
dc.publisherBioMed Centralen_ZA
dc.publisher.departmentDepartment of Medicineen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.rightsCreative Commons Attribution 4.0 International (CC BY 4.0)*
dc.rights.holderde Vries et al.; licensee BioMed Central Ltd.
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en_ZA
dc.sourceBMC Medical Ethicsen_ZA
dc.titleKnowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africaen_ZA
dc.typeJournal Articleen_ZA
uct.subject.keywordsData sharingen_ZA
uct.subject.keywordsGenomicsen_ZA
uct.subject.keywordsMalariaGENen_ZA
uct.subject.keywordsEthnic stigmatisationen_ZA
uct.subject.keywordsEthicsen_ZA
uct.type.filetype
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceArticleen_ZA
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