Beyond Our Borders? Public Resistance to Global Genomic Data Sharing

PLoS Biology

Volumn 14, Issue 11, 2016, Pages

  Majumder, Mary A ^a   Cook Deegan, Robert ^b,c   McGuire, Amy L ^a  

^a BAYLOR COLLEGE OF MEDICINE   (United States)

^b ARIZONA STATE UNIVERSITY   (United States)

^c FasterCures   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

HUMAN; LEADERSHIP; PRIVACY; SCIENTIST; UNITED STATES; UNIVERSITY; VISION; INFANT; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; PUBLIC OPINION;

HUMANS; INFANT; INFORMATION DISSEMINATION; INTERNATIONALITY; PUBLIC OPINION;

EID: 85007298611     PISSN: 15449173     EISSN: 15457885     Source Type: Journal    
DOI: 10.1371/journal.pbio.2000206     Document Type: Article

References (35)

1. Collins FS, Varmus H, A new initiative on precision medicine. N Engl J Med. 2015;372:793–795. doi: 10.1056/NEJMp150052325635347
2. Principles Agreed at the First International Strategy Meeting on Human Genome Sequencing. Bermuda, Human Genome Organisation; 1996.
3. Toronto International Data Release Workshop AuthorsBirney E, Hudson TJ, Green ED, Gunter C, Eddy S, Rogers J, et al. Prepublication data sharing. Nature. 2009;461:168–170. doi: 10.1038/461168a19741685
4. Global Alliance for Genomics and Health. Framework for Responsible Sharing of Genomic and Health-Related Data. 10 Sept 2014. https://genomicsandhealth.org/framework. Accessed 26 August 2016.
5. Modjarrad K, Moorthy VS, Millett P, Gsell P-S, Roth C, Kieny M-P, Developing global norms for sharing data and results during public health emergencies. PLoS Med. 2016;13(1): e1001935. doi: 10.1371/journal.pmed.1001935. eCollection 2016. 26731342
6. Jao I, Kombe F, Mwalukore S, Bull S, Parker M, Kamuya D, et al. Research stakeholders’ views on benefits and challenges for public health research data sharing in Kenya: the importance of trust and social relations. PLoS ONE. 2015; doi: 10.1371/journal.pone.0135545. eCollection 2015. 26331716
7. Bull S, Roberts N, Parker M, Views of ethical best practices in sharing individual-level data from medical and public health research: a systematic scoping review. Journal of Empirical Research on Human Research Ethics2015;10:225–238. doi: 10.1177/155626461559476726297745
8. Williams H, Intellectual property rights and innovation: evidence from the Human Genome. Journal of Political Economy. 2013;121:1–27.
9. Zawati MH, Knoppers B, Thorogood A, Population biobanking and international collaboration. Pathobiology. 2014;81:276–285. doi: 10.1159/00035752725792216
10. Ferla R, Calo V, Cascio S, Rinaldi G, Badalamenti G, Carreca I, et al. Founder mutations in BRCA1 and BRCA2 genes. Ann Oncol. 2007;18Suppl 6:vi93–8.
11. Manrai AK, Funke BH, Rehm HL, Olesen MS, Maron BA, Szolovits P, et al. Genetic misdiagnoses and the potential for health disparities. N Engl J Med2016;375:655–665. doi: 10.1056/NEJMsa150709227532831
12. Merson L, Gaye O, Guerin PJ, Avoiding data dumpsters—toward equitable and useful data sharing. N Engl J Med. 2016;374:2414–2415. doi: 10.1056/NEJMp160514827168351
13. United Nations Educational, Scientific and Cultural Organization (UNESCO). Universal Declaration on the Human Genome and Human Rights. 11 November 1997.
14. Fehr E, Fischbacher U, The nature of human altruism. Nature2003;425:785–791. doi: 10.1038/nature0204314574401
15. Sudlow C, Gallacher J, Allen N, Beral V, Burton P, Danesh J, et al. UK Biobank: an open access resource for identifying the causes of a wide range of complex diseases of middle and old age. PLoS Med2015;2:e1001779. doi: 10.1371/journal.pmed.1001779. eCollection 2015. 25826379
16. Caulfield T, Borry P, Gottweis H, Industry involvement in publicly funded biobanks. Nat Rev Genet. 2014;15:220. doi: 10.1038/nrg370424772494
17. Ipsos MORI. The one-way mirror: public attitudes to commercial access to health data (report prepared for the Wellcome Trust). March 2016. https://www.ipsos-mori.com/Assets/Docs/Publications/sri-wellcome-trust-commercial-access-to-health-data.pdf. Accessed 26 August 2016.
18. Garrison NA, Sathe NA, Antommaria AHM, Holm I, Sanderson S, Smith ME, et al. A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States. Genet Med. 2016;18:663–671. doi: 10.1038/gim.2015.13826583683
19. Kaufman DJ, Baker R, Milner LC, Devaney S, Hudson KL, A survey of U.S. adults’ opinions about conduct of a nationwide precision medicine initiative cohort study of genes and environment. PLoS ONE2016;11(8): e0160461. doi: 10.1371/journal.pone.0160461. eCollection 2016. 27532667
20. Kaufman D, Murphy J, Erby L, Hudson K, Scott J, Veterans' attitudes regarding a database for genomic research. Genet Med. 2009;11(5):329–337. doi: 10.1097/GIM.0b013e31819994f819346960
21. Buhrmester M, Kwang T, Gosling SD, Amazon's Mechanical Turk: a new source of inexpensive, yet high-quality, data?Perspect Psychol Sci. 2011;6:3–5. doi: 10.1177/174569161039398026162106
22. Tupasela A, Sihvo S, Snell K, Jallinoja P, Aro AR, Hemminki E, Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. 2010;38:46–52.
23. Ahram M, Othman A, Shahrouri M, Mustafa E, Factors influencing public participation in biobanking. 2014;22:445–451.
24. Joly Y, Dalpe G, So D, Birko S, Fair shares and sharing fairly: a survey of public views on open science, informed consent and participatory research in biobanking. PLoS ONE10(7):e0129893. doi: 10.1371/journal.pone.0129893. eCollection 2015. 26154134
25. Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y, Identifying personal genomes by surname inference. Science. 2013;339:321–324. doi: 10.1126/science.122956623329047
26. Erlich Y, Williams JB, Glazer D, Yocum K, Farahany N, Olson M, et al. Redefining genomic privacy: trust and empowerment. PLOS Biol2014;12:e1001983. doi: 10.1371/journal.pbio.1001983. eCollection 2014. 25369215
27. Kaye J, The tension between data sharing and the protection of privacy in genomics research, Annu Rev Genomics Hum Genet2012;13:415–431. doi: 10.1146/annurev-genom-082410-10145422404490
28. Caulfield T, Kaye J, Broad consent in biobanking: reflections on seemingly insurmountable dilemmas. Med Law Int. 2009;10:85–100.
29. Carter KW, Francis RW, Bresnahan M, Gissler M, Grønborg TK, Gross R, Gunnes N et al. ViPAR: a software platform for the Virtual Pooling and Analysis of Research Data. Intl J Epidemiol; 2016;45:408–416.
30. Gaye A, Marcon Y, Isaeva J, LaFlamme P, Turner A, Jones EM, et al. DataSHIELD: taking the analysis to the data, not the data to the analysis. Intl J Epidemiol2014;43:1929–1944.
31. Wallace SE, Gaye A, Shoush O, Burton PR, Protecting personal data in epidemiological research: DataSHIELD and UK law. Public Health Genomics2014;17:149–157. doi: 10.1159/00036025524685519
32. 21st Century Cures: A Call to Action, 1 May 2014. http://energycommerce.house.gov/sites/republicans.energycommerce.house.gov/files/analysis/21stCenturyCures/20140501WhitePaper.pdf. Accessed 26 August 2016.
33. Whitman W. Leaves of Grass. http://www.gutenberg.org/files/1322/1322-h/1322-h.htm. Accessed 26 August 2016.
34. Rothstein MA, Knoppers BM, Harrell HL, Comparative approaches to biobanks and privacy. J Law Med Ethics. 2016;44:161–172. 27256132
35. Dove ES, Townend D, Meslin EM, Bobrow M, Littler K, Nicol D, et al. Ethics review for international data-intensive research. Science2016;351:1399–1400. doi: 10.1126/science.aad526927013718