Participant-centric initiatives: Tools to facilitate engagement in research

Applied and Translational Genomics

Volumn 1, Issue , 2012, Pages 25-29

  Anderson, Nicholas ^a,b   Bragg, Caleb ^c   Hartzler, Andrea ^a   Edwards, Kelly ^a  

^a UNIVERSITY OF WASHINGTON   (United States)

^b UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

^c WHEATON COLLEGE   (United States)

Author keywords

Applied research; Ethical and social issues; Participant engagement; Research communication; Software tools

Indexed keywords

ARTICLE; AWARENESS; CLINICAL RESEARCH; DECISION MAKING; HEALTH CARE CONCEPTS; HUMAN; PARTICIPANT CENTRIC INITIATIVE; PARTICIPATORY MANAGEMENT; PARTICIPATORY RESEARCH; PATIENT INFORMATION; PATIENT PARTICIPATION; PRIORITY JOURNAL; PUBLIC RELATIONS; SOCIAL INTERACTION; SOCIAL NETWORK;

EID: 84870059904     PISSN: 22120661     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.atg.2012.07.001     Document Type: Article

References (44)

1. Beskow L.M., Smolek S. Prospective biorepository participants' perspectives on access to research results. Journal of Empirical Research on Human Research Ethics 2009, 4:99-111.
2. Bowen D.J., Penchaszadeh V.B. Special issue: enhancing minority recruitment into genetics research. Community Genetics 2008, 11(4):189-190.
3. Brase T. Privacy and medical records research. NEJM 1998, 338:1076-1077.
4. Bussey-Jones J., Garrett J., Henderson G., Moloney M., Blumenthal C., Corbie-Smith G. The role of race and trust in tissue/blood donation for genetic research. Genetics in Medicine 2010, 12(2):116-121. (Feb).
5. Cecile A., Janssens J.W., van Duijn C. An epidemiological perspective on the future of direct-to-consumer personal genome testing. Investigative Genetics 2010, 1:10.
6. Center for information and study on clinical research participation (CISCRP) Professionals: Clinical Trial Facts and Figures Retrieved June 2 2012 from: http://www.ciscrp.org/professional/facts_pat.html#5.
7. CES4Health.info Retrieved June 1 2012 from: http://www.ces4health.info.
8. Collins S.F. Reengineering translational science: the time is right. Science Translational Medicine 2011, 3:90cm17.
9. Special Issue of "Science law and Technology" 2012, Sage, July. C. Corradetti, D. Mascalzoni (Eds.).
10. Eolgin E. Personalized investigation. Nature Medicine 2010, 16:953-955.
11. Fullerton S.M., Lee S.L. Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel. BMC Medical Ethics 2011, 12:16.
12. Fullerton S.M., Anderson N.R., Guzauskas G., Freeman D., Fryer-Edwards K. Meeting the governance challenges of next-generation biorepository research. Science Translational Medicine 2010, 2:15cm3.
13. Genetic Alliance Retrieved June 1 2012 from: http://geneticalliance.org.
14. Gottweis H., Chen H., Starkbaum J. Biobanks and the phantom public. Human Genetics 2011, 130:433-440.
15. Gust S., Seifer S. The central role of governance in community-based participatory research. Progress in Community Health Partnerships 2011, 5:105-107.
16. Hansson M.G., Dillner J., Bartram C.R., Carlson J.A., Helgesson G. Should donors be allowed to give broad consent to future biobank research?. The Lancet Oncology 2006, 7:266-269.
17. Harmon A. Indian Tribe Wins Fight to Limit Research of Its DNA 2010, New York Times, April 21.
18. Heeney C., Hawkins N., de Vries J., Boddington P., Kaye J. Assessing the privacy risks of data sharing in genomics. Public Health Genomics 2011, 14:17-25.
19. James R.D., Yu J.H., Henrikson N.B., Bowen D.J., Fullerton S.M. Strategies and stakeholders: minority recruitment in cancer genetics research, Health Disparities Working Group. Community Genetics 2008, 11(4):241-249. (Epub 2008 Apr 14. Review).
20. Kaye J., Heeney C., Hawkins N., de Vries J., Boddington P. Data sharing in genomics-re-shaping scientific practice. Nature Reviews Genetics 2009, 10:331-335.
21. Kaye J., Curren L., Anderson N., Bradford T., Edwards K., Fullerton S.M., et al. User-centric initiatives in health and biomedical research. Nature Reviews Genetics 2012, 13(5):371-376. (April 3) http://dx.doi.org/10.1038/nrg3218.
22. Ludman E.J., Fullerton S., Sprangler L., Trinidad S., Fujiii M., Jarvik G., Larson E., Burke W. Glad you asked: participants' opinions of re-consent for dbGaP data submission. Journal of Empirical Research on Human Research Ethics 2010, 5:9-16.
23. Mascalzoni D., Hicks A., Pramstaller P., Wjst M. Informed consent in the genomics era. PLoS Medicine 2008, 5:e192.
24. McGuire A.L., Basford M., Dressler L., Fullerton S., Koenig B., Li R., McCarty C. Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE consortium experience. Genome Research 2011, 21:1001-1007.
25. Meslin E.M., Cho M. Research ethics in the era of personalized medicine: updating science's contract with society. Public Health Genomics 2010, 13:378-384.
26. Nordgren A. Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies. Journal of Community Genetics 2012, (Epub ahead of print 22 March).
27. Root J. Texas officials agree to destroy babies blood samples after setting lawsuit 2010, The Associated Press, February 14.
28. Sharp R.R., Landy D. The financing of clinical genetics research by disease advocacy organizations: a review of funding disclosures in biomedical journals. American Journal of Medical Genetics 2010, 152A:3051-3056.
29. Sheehan M. Can broad consent be informed consent?. Public Health Ethics 2011, 4(3):226-235. (Available online August 2011).
30. Silverman H., Hull S.C., Sugarman J. Variability among institutional review boards' decisions within the context of a multicenter trial. Critical Care Medicine 2001, 29:235-241.
31. Simon C.M., L'heureux J., Murray J.C., Winokur J., Weiner G., Newbury E., Shinkunas L., Zimmerman B. Active choice but not too active: public perspectives on biobank consent models. Genetics in Medicine 2011, 13:821-831.
32. Sung N.S., Crowley W.F., Genel M., Salber P., Sandy L., Sherwood L.M., et al. Central challenges facing the national clinical research enterprise. JAMA 2003, 289:1278-1287.
33. Swan M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmental Research and Public Health 2009, 6:492-525.
34. Terry S., Terry P. Power to the people: participant ownership of clinical trial data. Science Translational Medicine 2011, 3.
35. Trinidad S.B., Fullerton S., Barnes J., Larson E., Burke W. Genomic research and wide data sharing: views of prospective participants. Genetics in Medicine 2010, 12:486-495.
36. Trinidad S.B., Fullerton S.M., Ludman E.J., Jarvik G.P., Larson E.B., Burke W. Research ethics. Research practice and participant preferences: the growing gulf. Science 2011, 331:287-288.
37. Tung J., Chuong D., Hinds D., Kiefer A., Macpherson J., Chowdry A., et al. Efficient replication of over 180 genetic associations with self-reported medical data. PloS One 2011, 6.
38. U.K.E-Health Records Failure Makes U.S.Plan Shine Information Week Oct 6. http://www.informationweek.com/news/healthcare/leadership/231900143.
39. Warren S., Brandeis L. The right to privacy. Harvard Law Review 1890, 4:193-220.
40. Weitzman E.R., Adida B., Kelemen S., Mandl K.D. Sharing data for public health research by members of an international online diabetes social network. PLoS One 2011, 6:e19256.
41. Weng C., Bigger J., Busacca L., Wilcox A., Getaneh A. Comparing the effectiveness of a clinical registry and a clinical data warehouse for supporting clinical trial recruitment: a case study. AMIA Annual Symposium Proceedings 2010, 867-871.
42. Wicks P., Massagli M., Frost J., Brownstein C., Okun S., Vaughan T., et al. Sharing health data for better outcomes on Patientslikeme. JMIR 2010, 12:e19. (Jun 14).
43. Wicks P., Vaughan T.E., Massagli M.P., Heywood J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology 2011, 29:411-414.
44. Wynia M.K., Gamble V.N. Mistrust among minorities and the trustworthiness of medicine. PLoS Medicine 2006, 3(5):e244. (author reply e245. Epub 2006 May 30).