Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research

Author:

Kim Jihoon1,Kim Hyeoneui2,Bell Elizabeth3,Bath Tyler1,Paul Paulina1,Pham Anh1,Jiang Xiaoqian4,Zheng Kai5,Ohno-Machado Lucila16

Affiliation:

1. Department of Biomedical Informatics, UC San Diego Health, University of California, San Diego, La Jolla

2. School of Nursing, Duke University, Durham, North Carolina

3. Office of Graduate Studies and Research, California State University, San Marcos

4. School of Biomedical Informatics, University of Texas Health Science Center, Houston

5. Department of Informatics, University of California, Irvine

6. Division of Health Services Research and Development, Veterans Affairs San Diego Healthcare System, La Jolla, California

Publisher

American Medical Association (AMA)

Subject

General Medicine

Reference24 articles.

1. Is deidentification sufficient to protect health privacy in research?;Rothstein;Am J Bioeth,2010

2. Identifying inference attacks against healthcare data repositories.;Vaidya;AMIA Jt Summits Transl Sci Proc,2013

3. Methods for the de-identification of electronic health records for genomic research.;El Emam;Genome Med,2011

4. Ethical issues in electronic health records: a general overview.;Ozair;Perspect Clin Res,2015

5. Clinical trial participants’ views of the risks and benefits of data sharing.;Mello;N Engl J Med,2018

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