Foster, M. W. & Sharp, R. R. Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nature Rev. Genet. 8, 633-639

Department of Anthropology, University of Oklahoma, Norman, Oklahoma 73019, USA.
Nature Reviews Genetics (Impact Factor: 36.98). 09/2007; 8(8):633-9. DOI: 10.1038/nrg2124
Source: PubMed


Emerging technologies make genomic analyses more efficient and less expensive, enabling genome-wide association and gene-environment interaction studies. In anticipation of their results, funding agencies such as the US National Institutes of Health and the Wellcome Trust are formulating guidelines for sharing the large amounts of genomic data that are generated by the projects that they sponsor. Data-sharing policies can have varying implications for how disease susceptibility and drug-response research will be pursued by the scientific community, and for who will benefit from the resulting medical discoveries. We suggest that the complex interplay of stakeholders and their interests, rather than single-issue and single-stakeholder perspectives, should be considered when deciding genomic data-sharing policies.

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    • "In light of the increasing availability of genomic data, data sharing and open access policies were promoted by large international consortia in order to maximize the use of generated datasets and enhance the statistical power of studies. Funding organizations also drafted policies to expand accessibility and use of datasets by requiring researchers to incorporate data sharing plans in their fund-seeking proposals (Foster and Sharp 2007; NIH 2014). As a consequence, central on-line databases such as the database of Genotypes and Phenotypes (dbGaP) a and the European Genome-phenome Archive b have been designated to host vast volumes of data either in a publicly accessible or controlled fashion. "
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    ABSTRACT: In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals' control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration.
    03/2015; 11(3). DOI:10.1186/s40504-014-0022-7
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    • "In addition to this kind of sharing, genomic researchers are also increasingly expected to share data with researchers who were not initially involved in the collaboration. The general expectation is that the utility of genomic data is greatly increased when such data are made available to the wider scientific community, and that this will reduce the costs of research whilst simultaneously speeding up the process of scientific discovery [1,2]. Furthermore, the sharing of data is expected to reduce the number of people from whom samples need to be collected afresh for research – thus reducing the possibility for adverse events. "
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    ABSTRACT: 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.
    BMC Medical Ethics 08/2014; 15(1):62. DOI:10.1186/1472-6939-15-62 · 1.50 Impact Factor
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    • "The range of ethical issues identified is extensive. It includes concerns about: privacy and whether anonymity can be guaranteed [10]; data security [11]; the implications of collecting and storing vast amounts of data and its uncertain future use; the implications of data release for populations and for family members of participants [7]; the need to strike a proper balance between research and protection [65]; the development of appropriate governance mechanisms [31]; the implications for trust, consent and autonomy [45,66]; commercialisation; and the ethical importance of the sustainability of databases. "
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    ABSTRACT: Genome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania. We explore ethical issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations. Many ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects.
    BMC Medical Ethics 03/2011; 12(1):5. DOI:10.1186/1472-6939-12-5 · 1.50 Impact Factor
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