Raw Personal Data: Providing Access-Reference-Cited by-同舟云学术

Raw Personal Data: Providing Access

Published:2014-01-24 Issue:6169 Volume:343 Page:373-374
ISSN:0036-8075
Container-title:Science
language:en
Short-container-title:Science

Author:

Lunshof Jeantine E.¹²,Church George M.¹,Prainsack Barbara³

Affiliation:

1. Department of Genetics, Harvard Medical School, Boston, MA 02115, USA.

2. Department of Molecular Cell Physiology, VU University Amsterdam, 1081 HV Amsterdam, Netherlands.

3. Department of Social Science, Health and Medicine, King's College London, London WC2R 2LS, UK.

Abstract

Donors should have access to raw data derived from their contributions to research or clinical repositories to increase personal choice and reciprocity.

Publisher

American Association for the Advancement of Science (AAAS)

Subject

Multidisciplinary

Reference10 articles.

1. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing

2. Recommendations for returning genomic incidental findings? We need to talk!

3. Whole-genome sequencing in health care

4. Presidential Commission for the Study of Bioethical Issues, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (U.S. Department of Health and Human Services, Washington, DC, 2013); www.bioethics.gov.

5. A public resource facilitating clinical use of genomes

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