Genetic Data Aren't So Special: Causes and Implications of Reidentification

dc.contributor.authorKasperbauer, T.J.
dc.contributor.authorSchwartz, Peter H.
dc.contributor.departmentPhilosophy, School of Liberal Artsen_US
dc.date.accessioned2020-11-17T14:07:01Z
dc.date.available2020-11-17T14:07:01Z
dc.date.issued2020-10-23
dc.description.abstractGenetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that they are in fact necessary. We further argue that the similarities between genetic and nongenetic information have important implications for communicating risks during consent for health care and research. While patients and research participants need to be more aware of pervasive data-sharing practices, consent forms are the wrong place to provide this education. Instead, health systems should engage with patients throughout patient care to educate them about data-sharing practices.en_US
dc.eprint.versionAuthor's manuscripten_US
dc.identifier.citationKasperbauer, T. J., & Schwartz, P. H. (2020). Genetic Data Aren’t So Special: Causes and Implications of Reidentification. Hastings Center Report, 50(5), 30–39. https://doi.org/10.1002/hast.1183en_US
dc.identifier.issn1552-146Xen_US
dc.identifier.urihttps://hdl.handle.net/1805/24431
dc.language.isoen_USen_US
dc.publisherWileyen_US
dc.relation.isversionof10.1002/hast.1183en_US
dc.relation.journalHastings Center Reporten_US
dc.rightsIUPUI Open Access Policyen_US
dc.sourceAuthoren_US
dc.subjectgenetic dataen_US
dc.subjectgenetic essentialismen_US
dc.subjectidentifiabilityen_US
dc.subjectinformed consenten_US
dc.subjectprivacyen_US
dc.titleGenetic Data Aren't So Special: Causes and Implications of Reidentificationen_US
dc.typeArticleen_US
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