Deborah Stiles, JD; Paul S. Appelbaum, MD
Grant Support: By grant UL1TR001873 from the National Center for Advancing Translational Sciences, National Institutes of Health (NIH). Dr. Appelbaum received additional support from grants P50HG007257, RM1HG007257, and U01HG008680 from the National Human Genome Research Institute, NIH.
Disclosures: Dr. Appelbaum reports grants from the National Human Genome Research Institute and National Center for Advancing Translational Sciences during the conduct of the study. Authors not named here have disclosed no conflicts of interest. Disclosures can also be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M18-2666.
Editors' Disclosures: Christine Laine, MD, MPH, Editor in Chief, reports that her spouse has stock options/holdings with Targeted Diagnostics and Therapeutics. Darren B. Taichman, MD, PhD, Executive Editor, reports that he has no financial relationships or interests to disclose. Cynthia D. Mulrow, MD, MSc, Senior Deputy Editor, reports that she has no relationships or interests to disclose. Jaya K. Rao, MD, MHS, Deputy Editor, reports that she has stock holdings/options in Eli Lilly and Pfizer. Catharine B. Stack, PhD, MS, Deputy Editor, Statistics, reports that she has stock holdings in Pfizer, Johnson & Johnson, and Colgate-Palmolive. Christina C. Wee, MD, MPH, Deputy Editor, reports employment with Beth Israel Deaconess Medical Center. Sankey V. Williams, MD, Deputy Editor, reports that he has no financial relationships or interests to disclose. Yu-Xiao Yang, MD, MSCE, Deputy Editor, reports that he has no financial relationships or interest to disclose.
Corresponding Author: Paul S. Appelbaum, MD, New York State Psychiatric Institute, Unit 122, 1051 Riverside Drive, New York, NY 10032; e-mail, firstname.lastname@example.org.
Current Author Addresses: Ms. Stiles: Mail Code 4310, 313 Low Library, Columbia University, New York, NY 10027.
Dr. Appelbaum: New York State Psychiatric Institute, Unit 122, 1051 Riverside Drive, New York, NY 10032.
Author Contributions: Conception and design: P.S. Appelbaum.
Drafting of the article: D. Stiles, P.S. Appelbaum.
Critical revision for important intellectual content: D. Stiles, P.S. Appelbaum.
Final approval of the article: D. Stiles, P.S. Appelbaum.
Obtaining of funding: P.S. Appelbaum.
Patients and research participants have indicated that privacy of their genetic test results is an important concern, particularly with respect to insurance coverage. Internists and other physicians whose patients ask about legal protections for information generated by genome sequencing for clinical purposes can provide both reassurance and caution. Protections for medical information in general, as well as laws in some states that provide additional safeguards for genetic data, should reassure patients that this information will remain private. Patients themselves will need to weigh the risks versus the benefits of generating genomic data in deciding whether to undergo exome sequencing.
Stiles D, Appelbaum PS. Cases in Precision Medicine: Concerns About Privacy and Discrimination After Genomic Sequencing. Ann Intern Med. 2019;170:717–721. doi: 10.7326/M18-2666
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Published: Ann Intern Med. 2019;170(10):717-721.
Published at www.annals.org on 7 May 2019
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