Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

article has not abstract

Vyšlo v časopise: Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations. PLoS Med 9(10): e32767. doi:10.1371/journal.pmed.1001328
Kategorie: Essay
prolekare.web.journal.doi_sk: https://doi.org/10.1371/journal.pmed.1001328

Souhrn

article has not abstract

Zdroje

1. 23andMe (2012) 23andMe. Available: https://www.23andme.com/research. Accessed 1 September 2012.

2. PatientsLikeMe (2012) PatientsLikeMe. Available: http://www.patientslikeme.com/help/faq/Our Vision. Accessed 1 September 2012.

3. 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.

4. 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.

5. 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.

6. 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.

7. International Parkinson Disease Genomics Consortium, Wellcome Trust Case Control Consortium (2011) A two-stage meta-analysis identifies several new loci for Parkinson's disease. PLoS Genet 7: e1002142 doi:10.1371/journal.pgen.1002142.

8. LillCM, RoehrJT, McQueenMB, KavvouraFK, BagadeS, et al. (2012) Comprehensive research synopsis and systematic meta-analyses in Parkinson's disease genetics: The PDGene database. PLoS Genet 8: e1002548 doi:10.1371/journal.pgen.1002548.

9. Hindorff L, MacArthur J, Wise A, Junkins H, Hall P, et al.. (2012) A catalog of published genome-wide association studies. Available: http://www.genome.gov/gwastudies. Accessed 1 September 2012.

10. AggarwalSP, ZinmanL, SimpsonE, McKinleyJ, JacksonKE, et al. (2010) Safety and efficacy of lithium in combination with riluzole for treatment of amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled trial. Lancet Neurol 9: 481–488.

11. ChiòA, BorgheroG, CalvoA, CapassoM, CaponnettoC, et al. (2010) Lithium carbonate in amyotrophic lateral sclerosis: lack of efficacy in a dose-finding trial. Neurology 75: 619–625.

12. Delgado-RodríguezM, LlorcaJ (2004) Bias. J Epidemiol Community Health 58: 635–641.

13. BlossCS, SchorkNJ, TopolEJ (2011) Effect of direct-to-consumer genomewide profiling to assess disease risk. N Engl J Med 364: 524–534.

14. WicksP, MassagliM, FrostJ, BrownsteinC, OkunS, et al. (2010) Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 12: e19.

15. PrainsackB (2011) Voting with their mice: personal genome testing and the “participatory turn” in disease research. Account Res 18: 132–147.

16. VanderWeeleTJ, WeeleTV (2010) Genetic self knowledge and the future of epidemiologic confounding. Am J Hum Genet 87: 168–172.

17. KayeJ, CurrenL, AndersonN, EdwardsK, FullertonSM, et al. (2012) From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 13: 371–376.

18. The Spittoon (2010) SNPwatch: uncertainty surrounds longevity GWAS. Available: http://spittoon.23andme.com/news/inside-23andme/snpwatch-uncertainty-surrounds-longevity-gwas/. Accessed 1 September 2012.

19. SebastianiP, SolovieffN, PucaA, HartleySW, MelistaE, et al. (2010) Genetic signatures of exceptional longevity in humans. Science 2010 Jul 1.

20. BrownsteinCA, BrownsteinJS, WilliamsDS, WicksP, HeywoodJA (2009) The power of social networking in medicine. Nat Biotechnol 27: 888–890.

21. Carmichael A (2012) CureTogether acquired by 23andMe. Available: http://curetogether.com/blog/2012/07/15/curetogether-acquired-by-23andme/. Accessed 1 September 2012.