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J Community Genet. 2014 Jul;5(3):205-13. doi: 10.1007/s12687-013-0175-8. Epub 2013 Dec 5.

Public attitudes regarding the use of electronic health information and residual clinical tissues for research.

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1
Department of Pediatrics and Medical Ethics, University of Utah, Salt Lake City, UT, USA.

Abstract

Use of electronic medical records (EMR) and residual clinical biospecimens have become important for the conduct of biomedical research. Currently, human subjects' protection regulations permit much of this research to be conducted without individual informed consent, posing a risk to biomedical research from public objection. We sought to understand public attitudes regarding access to EMRs and residual clinical biospecimens. This article reports the results of 12 focus groups with 131 participants conducted in Utah, Washington, Arizona, and Minnesota. Results indicate strong support for biomedical and genetic research in general and clear support for improved patient education regarding research access to individual data and biospecimens. Our participants were supportive of an opt-out approach to patient decision-making regarding research access to clinical data and biospecimens for research in general.

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