Top Concern with Non-Consensual Data Disclosure: Patients Would Feel Violated and Lose Trust in Researchers
Regarding what harm could be done if personal health information was disclosed without patients’ consent, 77 percent responded, “I would feel violated and my trust in the researchers betrayed.” Other commonly cited concerns included being:
- Discriminated against in obtaining health insurance: 67 percent
- Discriminated against in obtaining life insurance: 56 percent
- Discriminated against by an employer: 44 percent
- Discriminated against in a government program: 39 percent
- Embarrassed before friends, associates or the public: 33 percent
Finally, when asked if they agreed that “Even if nothing that identifies me were ever published or given to an organization making consumer or employee decisions about me, I still worry about a professional health researcher seeing my medical records”—50 percent said yes (12 strongly; 38 somewhat).
Overall, the survey findings show that most Americans generally trust medical researchers “somewhat” to keep their health information private, but they first want researchers to explain studies to them and get their consent for each study.
Our nation’s longstanding ethic of “consent of the governed” applies to today’s medical researchers. Americans clearly are demanding “consent of the studied.” Researchers can prevent Americans from feeling violated and betrayed by upholding the precious ethic of informed consent.
Sources:
- “Ask and Ye Shall Receive: Study,” by Joseph Conn, Modern Healthcare, October 19, 2007: www.modernhealthcare.com/apps/pbcs.dll/article?AID=/20071019/FREE/310190004/1029/FREE
- “Striking a Balance Between Privacy and Health,” by Joseph Conn, Modern Healthcare, October 22, 2007: www.modernhealthcare.com/apps/pbcs.dll/article?AID=/20071022/FREE/310220003/0/FRONTPAGE
- “IOM Project Survey Findings on Health Research and Privacy,” PowerPoint presentation by Dr. Alan F. Westin before the Institute of Medicine (IOM), October 2, 2007: www.forhealthfreedom.org/BackgroundResearchData/WestinIOMSrvyRept.pdf
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* The pollsters presented the following detailed setup question, followed by five (randomized) alternatives:
“When conducting health studies, researchers often want to select patients whose personally-identified medical or health information is contained in patient records. Sometimes, the patients will be invited to give general approval to have their records used in future health research. Or, the researchers may seek patient consent to join a specific study. For some studies, researchers seek to include the patient information automatically in the research, without seeking any consent.
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Provided by Institute for Health Freedom on 11/13/2007