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Conducting a Large, Multi-Site Survey About Patients' Views on Broad Consent: Challenges and Solutions

dc.contributor.authorClayton, Ellen W.
dc.contributor.authorSmith, Maureen E.
dc.contributor.authorSanderson, Saskia C.
dc.contributor.authorEt al.
dc.identifier.citationBMC Medical Research Methodology (2016) 16:162en_US
dc.descriptionarticle published in a medical journalen_US
dc.description.abstractAs biobanks play an increasing role in the genomic research that will lead to precision medicine, input from diverse and large populations of patients in a variety of health care settings will be important in order to successfully carry out such studies. One important topic is participants’ views towards consent and data sharing, especially since the 2011 Advanced Notice of Proposed Rulemaking (ANPRM), and subsequently the 2015 Notice of Proposed Rulemaking (NPRM) were issued by the Department of Health and Human Services (HHS) and Office of Science and Technology Policy (OSTP). These notices required that participants consent to research uses of their de-identified tissue samples and most clinical data, and allowing such consent be obtained in a one-time, open-ended or “broad” fashion. Conducting a survey across multiple sites provides clear advantages to either a single site survey or using a large online database, and is a potentially powerful way of understanding the views of diverse populations on this topic.en_US
dc.format.extent1 PDF (11 pages)en_US
dc.publisherBMC Medical Research Methodologyen_US
dc.subject.lcshMedical laws and legislationen_US
dc.titleConducting a Large, Multi-Site Survey About Patients' Views on Broad Consent: Challenges and Solutionsen_US

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