Consent for use of personal information for health research: Do people with potentially stigmatizing health conditions and the general public differ in their opinions?
Tóm tắt
Từ khóa
Tài liệu tham khảo
Anonymous: Dorland's Illustrated Medical Dictionary. 2007, Philadelphia: Saunders Elesvier, 31
Singleton P, Wadsworth M: Consent for the use of personal medical data in research. BMJ. 2006, 333: 255-258. 10.1136/bmj.333.7561.255.
Westin AF: How the public views privacy and health research. Results of a national survey commissioned by the Institute of Medicine Committee on "Health research and the privacy of health information: The HIPPA Privacy Rule". 2007, [ http://www.iom.edu/Object.File/Master/48/528/%20Westin%20IOM%20Srvy%20Rept%2011-1107.pdf ]
Willison DJ, Schwartz L, Abelson J, Charles C, Swinton M, Northrup D, Thabane L: Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public?. Journal of the American Medical Informatics Association. 2007, 14: 706-712. 10.1197/jamia.M2457.
Kass NE, Natowicz MR, Hull SC, Faden RR, Plantinga L, Gostin LO, Slutsman J: The use of medical records in research: what do patients want?. J Law Med Ethics. 2003, 31: 429-433. 10.1111/j.1748-720X.2003.tb00105.x.
Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA: Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. Soc Sci Med. 2007, 64: 223-235. 10.1016/j.socscimed.2006.08.045.
Robling MR, Hood K, Houston H, Pill R, Fay J, Evans HM: Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. J Med Ethics. 2004, 30: 104-109. 10.1136/jme.2003.005157.
Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM, for the COMPETE investigators: Patients' consent preferences for research uses of information in electronic medical records: Interview and survey data. BMJ. 2003, 326: 373-376. 10.1136/bmj.326.7385.373.
Whiddett R, Hunter I, Engelbrecht J, Handy J: Patients' attitudes towards sharing their health information. Int J Med Inform. 2006, 75: 530-541. 10.1016/j.ijmedinf.2005.08.009.
Page SA, Mitchell I: Patients' opinions on privacy, consent and the disclosure of health information for medical research. Chronic Dis Can. 2006, 27: 60-67.
Tocqueville A: Democracy in America. 1961, New York, NY: Schocken Books
Hair JF, Anderson RE, Tatham RL, Black WC: Multivariate data analysis. 1998, Upper Saddle River, New Jersey: Prentice Hall, 5
Willison DJ, Swinton M, Schwartz L, Abelson J, Charles C, Northrup D: Alternatives to project-specific consent for access to personal information for health research: insights from a public dialogue. BMC Med Ethics. 2008, 9 (18):
Diggle PJ, Heagerty P, Liang K, Zeger SL: Analysis of Longitudinal Data. 2002, Oxford: Oxford University Press, 2
Norberg PA, Horne DR: Privacy attitudes and privacy-related behavior. Psychology & Marketing. 2007, 24: 829-847. 10.1002/mar.20186.
Grant RW, Wald JS, Poon EG, Schnipper JL, Gandhi TK, Volk LA, Middleton B: Design and implementation of a web-based patient portal linked to an ambulatory care electronic health record: patient gateway for diabetes collaborative care. Diabetes Technology & Therapeutics. 2006, 8: 576-586. 10.1089/dia.2006.8.576.
Hess R, Bryce CL, Paone S, Fischer G, McTigue KM, Olshansky E, Zickmund S, Fitzgerald K, Siminerio L: Exploring challenges and potentials of personal health records in diabetes self-management: implementation and initial assessment. Telemedicine Journal & E-Health. 2007, 13: 509-517. 10.1089/tmj.2006.0089.