Balancing the Risks and Benefits of Genomic Data Sharing: Genome Research Participants’ Perspectives | Zendy

Jill M Oliver | Zendy; Melody J. Slashinski | Zendy; T. Wang | Zendy; Paul Kelly | Zendy; Susan G. Hilsenbeck | Zendy; Amy L. McGuire | Zendy

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Balancing the Risks and Benefits of Genomic Data Sharing: Genome Research Participants’ Perspectives

Author(s) -

Jill M Oliver,

Melody J. Slashinski,

T. Wang,

Paul Kelly,

Susan G. Hilsenbeck,

Amy L. McGuire

Publication year - 2011

Publication title -

public health genomics

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 0.701

H-Index - 51

eISSN - 1662-8063

pISSN - 1662-4246

DOI - 10.1159/000334718

Subject(s) - biobank , data sharing , stakeholder , data collection , business , medicine , public relations , political science , bioinformatics , sociology , alternative medicine , pathology , biology , social science

Technological advancements are rapidly propelling the field of genome research forward, while lawmakers attempt to keep apace with the risks these advances bear. Balancing normative concerns of maximizing data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information to ongoing deliberations.

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