Raw personal data: Providing access

Science

Volumn 343, Issue 6169, 2014, Pages 373-374

  Lunshof, Jeantine E ^a,b   Church, George M ^a   Prainsack, Barbara ^c  

^a HARVARD MEDICAL SCHOOL   (United States)

^b VU UNIVERSITY AMSTERDAM   (Netherlands)

^c KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

BEHAVIORAL RESPONSE; COST-BENEFIT ANALYSIS; DATA SET; LITERATURE REVIEW; NUMERICAL MODEL; RESEARCH WORK; STATISTICAL ANALYSIS;

ACCESS TO INFORMATION; DATA BASE; DATA PROCESSING; HUMAN; INFORMATION PROCESSING; INTERPERSONAL COMMUNICATION; PRIORITY JOURNAL; SCIENTIST; SHORT SURVEY; UNITED STATES; ARTICLE; ETHICS; INTERNET; MEDICAL RESEARCH;

ACCESS TO INFORMATION; BIOMEDICAL RESEARCH; HUMANS; INTERNET;

EID: 84892921429     PISSN: 00368075     EISSN: 10959203     Source Type: Journal    
DOI: 10.1126/science.1249382     Document Type: Short Survey

References (12)

1. R. C. Green et al., Genet. Med. 15, 565-574 (2013).
2. W. Burke et al., Genet. Med. 15, 854-859 (2013).
3. C. G. van El et al. Eur. J. Hum. Genet. 21, 580-584 (2013).
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. M. P. Ball et al., Proc. Natl. Acad. Sci. U.S.A. 109, 11920-11927 (2012).
6. B. Prainsack, A. Buyx, Med. Law Rev. 21, 71-91 (2013).
7. Levelt Committee, Noort Committee, Drenth Committee, Flawed Science: The Fraudulent Research Practices of Social Psychologist Diederik Stapel (Tilburg, Groningen, Amsterdam, 2012); https://www.commissielevelt.nl/.
8. The National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research, Ethical Principles and Guidelines for the Protection of Human Subjects in Research (U.S. Department of Health, Education, and Welfare, Washington, DC, 1979); www.hhs.gov/ohrp/humansubjects/guidance/ belmont.html.
9. U.S. Food and Drug Administration, A. Gutierrez, Warning Letter to 23 and Me, Inc., 22 November 2013; www. fda.gov/ICECI/EnforcementActions/ WarningLetters/2013/ucm376296.htm.
10. C. S. Bloss et al., J. Med. Genet. 50, 393-400 (2013).
11. K. Wasson et al., J. Community Genet. 4, 495-505 (2013).
12. Moral rights may or may not be reflected in enforceable legal rights at a given place or time. An in-depth analysis of this aspect falls outside the scope of this article.