Adapting Standards: Ethical Oversight of Participant-Led Health Research
article has not abstract
Vyšlo v časopise:
Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Med 10(3): e32767. doi:10.1371/journal.pmed.1001402
Kategorie:
Policy Forum
prolekare.web.journal.doi_sk:
https://doi.org/10.1371/journal.pmed.1001402
Souhrn
article has not abstract
Zdroje
1. KuehnBM (2011) Patients go online seeking support, practical advice on health conditions. JAMA 305: 1644–1645.
2. ValenteTW (2012) Network interventions. Science 337: 49–53.
3. BrownsteinCA, BrownsteinJS, WilliamsDS, WicksP, HeywoodJA (2009) The power of social networking in medicine. Nat Biotechnol 27: 888–890.
4. PrainsackB (2011) Voting with their mice: personal genome testing and the “participatory turn” in disease research. Account Res 18: 132–147.
5. SwanM (2012) Health 2050: the realization of personalized medicine through crowdsourcing, the Quantified Self, and the participatory biocitizen. J Pers Med 2: 93–118.
6. HoodL, FriendSH (2011) Predictive, personalized, preventive, participatory (P4) cancer medicine. Nat Rev Clin Oncol 8: 184–187.
7. ErikssonN, MacphersonJM, TungJY, HonLS, NaughtonB, 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. SwanM (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. AndersonN, BraggC, HartzlerA, EdwardsK (2012) Participant-centric initiatives: tools to facilitate engagement in research. Applied & Translational Genomics 1: 25–29.
10. KayeJ, CurrenL, AndersonN, EdwardsK, FullertonSM, et al. (2012) From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 13: 371–376.
11. DoCB, TungJY, DorfmanE, KieferAK, DrabantEM, 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. FrostJ, OkunS, VaughanT, HeywoodJ, WicksP (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. TungJY, DoCB, HindsDA, KieferAK, MacphersonJM, 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. WicksP, VaughanTE, MassagliMP, HeywoodJ (2011) Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 29: 411–414.
15. (2013) Genomera. Available: http://genomera.com/studies. Accessed 17 January 2013.
16. (2013) 23andMe. Available: https://www.23andme.com/invite-study/. Accessed 19 November 2012.
17. DolginE (2010) Personalized investigation. Nat Med 16: 953–955.
18. HoodL, FloresM (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. GibsonG, CopenhaverGP (2010) Consent and internet-enabled human genomics. PLoS Genet 6: e1000965 doi:10.1371/journal.pgen.1000965.
22. VayenaE, MastroianniA, KahnJ (2012) Ethical issues in health research with novel online sources. Am J Public Health 102: 2225–2230.
23. HaydenEC (2012) Informed consent: a broken contract. Nature 486: 312–314.
24. JanssensAC, KraftP (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. EdwardsSJ, KirchinS, HuxtableR (2004) Research ethics committees and paternalism. J Med Ethics 30: 88–91.
26. WhitneySN, SchneiderCE (2011) Viewpoint: a method to estimate the cost in lives of ethics board review of biomedical research. J Intern Med 269: 396–402.
27. ChalmersD (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. YoungNS, IoannidisJP, Al-UbaydliO (2008) Why current publication practices may distort science. PLoS Med 5: e201 doi:10.1371/journal.pmed.0050201.
30. RogawskiMA, FederoffHJ (2011) Disclosure of clinical trial results when product development is abandoned. Sci Transl Med 3: 102–129.
31. SpriggsM (2004) Canaries in the mines: children, risk, non-therapeutic research, and justice. J Med Ethics 30: 176–181.
32. WeinsteinND (1989) Optimistic biases about personal risks. Science 246: 1232–1233.
33. SwanM (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. TerrySF, TerryPF (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.
Štítky
Interné lekárstvoČlánok vyšiel v časopise
PLOS Medicine
2013 Číslo 3
- Parazitičtí červi v terapii Crohnovy choroby a dalších zánětlivých autoimunitních onemocnění
- Pleiotropní účinky statinů na kardiovaskulární systém
- Statiny indukovaná myopatie: Jak na diferenciální diagnostiku?
- Význam hydratace při hojení ran
- DESATORO PRE PRAX: Aktuálne odporúčanie ESPEN pre nutričný manažment u pacientov s COVID-19
Najčítanejšie v tomto čísle
- Surveillance Programme of IN-patients and Epidemiology (SPINE): Implementation of an Electronic Data Collection Tool within a Large Hospital in Malawi
- Adjunctive Atypical Antipsychotic Treatment for Major Depressive Disorder: A Meta-Analysis of Depression, Quality of Life, and Safety Outcomes
- Strengthening the Expanded Programme on Immunization in Africa: Looking beyond 2015
- The Cost and Impact of Scaling Up Pre-exposure Prophylaxis for HIV Prevention: A Systematic Review of Cost-Effectiveness Modelling Studies