Adapting Standards: Ethical Oversight of Participant-Led Health Research

PLoS Medicine

Volumn 10, Issue 3, 2013, Pages

  Vayena, Effy ^a   Tasioulas, John ^b  

^a UNIVERSITY OF ZURICH   (Switzerland)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CLINICAL TRIAL (TOPIC); DECISION MAKING; ETHICS; EXPERIMENTATION; HUMAN; INSTITUTIONALIZATION; MEDICAL RESEARCH; PERSONNEL MANAGEMENT; PHENOTYPE; PROFESSIONAL KNOWLEDGE; RESPONSIBILITY; RISK ASSESSMENT; SCIENTIST; SOCIAL MEDIA;

ACADEMIES AND INSTITUTES; COMMUNITY-BASED PARTICIPATORY RESEARCH; ETHICS, RESEARCH; HUMANS; MOTIVATION;

EID: 84875438870     PISSN: 15491277     EISSN: 15491676     Source Type: Journal    
DOI: 10.1371/journal.pmed.1001402     Document Type: Article

References (35)

1. Kuehn BM, (2011) Patients go online seeking support, practical advice on health conditions. JAMA 305: 1644-1645.
2. Valente TW, (2012) Network interventions. Science 337: 49-53.
3. Brownstein CA, Brownstein JS, Williams DS, Wicks P, Heywood JA, (2009) The power of social networking in medicine. Nat Biotechnol 27: 888-890.
4. Prainsack B, (2011) Voting with their mice: personal genome testing and the "participatory turn" in disease research. Account Res 18: 132-147.
5. Swan M, (2012) Health 2050: the realization of personalized medicine through crowdsourcing, the Quantified Self, and the participatory biocitizen. J Pers Med 2: 93-118.
6. Hood L, Friend SH, (2011) Predictive, personalized, preventive, participatory (P4) cancer medicine. Nat Rev Clin Oncol 8: 184-187.
7. Eriksson N, Macpherson JM, Tung JY, Hon LS, Naughton B, et al. (2010) Web-based, participant-driven studies yield novel genetic associations for common traits. PLoS Genet 6: e1000993 doi:10.1371/journal.pgen.1000993.
8. Swan M, (2009) Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health 6: 492-525.
9. Anderson N, Bragg C, Hartzler A, Edwards K, (2012) Participant-centric initiatives: tools to facilitate engagement in research. Applied & Translational Genomics 1: 25-29.
10. Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, et al. (2012) From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 13: 371-376.
11. Do CB, Tung JY, Dorfman E, Kiefer AK, Drabant EM, et al. (2011) Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease. PLoS Genet 7: e1002141 doi:10.1371/journal.pgen.1002141.
12. Frost J, Okun S, Vaughan T, Heywood J, Wicks P, (2011) Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res 13: e6.
13. Tung JY, Do CB, Hinds DA, Kiefer AK, Macpherson JM, et al. (2011) Efficient replication of over 180 genetic associations with self-reported medical data. PLoS ONE 6: e23473 doi:10.1371/journal.pone.0023473.
14. Wicks P, Vaughan TE, Massagli MP, Heywood J, (2011) Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 29: 411-414.
15. Genomera. (2013) Available: http://genomera.com/studies. Accessed 17 January 2013.
16. 23andMe. (2013) Available: https://www.23andme.com/invite-study/. Accessed 19 November 2012.
17. Dolgin E, (2010) Personalized investigation. Nat Med 16: 953-955.
18. Hood L, Flores M, (2012) A personal view on systems medicine and the emergence of proactive P4 medicine: predictive, preventive, personalized and participatory. N Biotechnol 29: 613-24.
19. Council of International Organizations of Medical Sciences (CIOMS) (2002) International ethical guidelines for biomedical research involving human subjects. Geneva: WHO.
20. US Department of Health, Education, and Welfare (1979) The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Available: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html. Accessed 8 February 2013.
21. Gibson G, Copenhaver GP, (2010) Consent and internet-enabled human genomics. PLoS Genet 6: e1000965 doi:10.1371/journal.pgen.1000965.
22. Vayena E, Mastroianni A, Kahn J, (2012) Ethical issues in health research with novel online sources. Am J Public Health 102: 2225-2230.
23. Hayden EC, (2012) Informed consent: a broken contract. Nature 486: 312-314.
24. Janssens AC, Kraft P, (2012) Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med 9: e1001328 doi:10.1371/journal.pmed.1001328.
25. Edwards SJ, Kirchin S, Huxtable R, (2004) Research ethics committees and paternalism. J Med Ethics 30: 88-91.
26. Whitney SN, Schneider CE, (2011) Viewpoint: a method to estimate the cost in lives of ethics board review of biomedical research. J Intern Med 269: 396-402.
27. Chalmers D, (2011) Viewpoint: are the research ethics committees working in the best interests of participants in an increasingly globalized research environment? J Intern Med 269: 392-395.
28. MacIntyre A (2007) After virtue. Notre Dame (Indiana): University of Notre Dame Press.
29. Young NS, Ioannidis JP, Al-Ubaydli O, (2008) Why current publication practices may distort science. PLoS Med 5: e201 doi:10.1371/journal.pmed.0050201.
30. Rogawski MA, Federoff HJ, (2011) Disclosure of clinical trial results when product development is abandoned. Sci Transl Med 3: 102-129.
31. Spriggs M, (2004) Canaries in the mines: children, risk, non-therapeutic research, and justice. J Med Ethics 30: 176-181.
32. Weinstein ND, (1989) Optimistic biases about personal risks. Science 246: 1232-1233.
33. Swan M, (2012) Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res 14: e46.
34. Terry SF, Terry PF, (2011) Power to the people: participant ownership of clinical trial data. Sci Transl Med 3: 69cm63.
35. Nielsen M. (2012) Reinventing discovery: the new era of networked science. Princeton: Princeton University Press.