Striking a balance between privacy and health

In the first of this two-part series on a study for the Institute of Medicine by researcher Alan Westin, emeritus professor of public law and government at Columbia University, we reported that many Americans will allow their heath records to be used for medical research, but privacy is a big issue. Many patients also want to be informed by researchers of the nature of the research project for which their personal information will be used. And, for many, they want to be asked for permission by researchers every time their medical records are used, according to a presentation by Westin earlier this month of preliminary findings from a survey conducted in September in conjunction with Harris Interactive.
Obtaining patient consent, at least in some form, was a threshold requirement for research project participation in which personal information was disclosed, according to an overwhelming majority of participants in Westin’s survey.
Only 1% of participants agreed that researchers would be free to use their health information without their consent while just 8% indicated an initial, “general consent” given in advance would suffice to have researchers use their information in future research projects without having to contact them.
In addition, just 19% would agree to have their personal information used without their consent “as long as the study never revealed my personal identity, and it was supervised by an institutional review board.”
Meanwhile, a plurality, 38% of survey respondents, would want researchers from “each research study … to first describe the study to me and get my specific consent for such use.”
And while respondent demographics were not a factor in many other survey areas, they mattered here. The survey found that higher-than-average percentages of respondents who insisted on researchers obtaining their consent for each use of their healthcare data included respondents who were: black (45%); college graduates (46%); in the working-class income bracket of $35,000 to $49,000 (45%); the pre-Medicare age group of 50-64 (43%); single women (43%); those with long-term health conditions (45%); those with a “sexual” condition (49%); mental health-service users (44%); and genetic-test takers (48%).
Another 20% were unsure about research participation and 13% would not want researchers to use their information or even contact them about a study “under any circumstances.”
“We have for 349 respondents detailed accounts of their participation in healthcare research,” Westin said. “When you ask people who have participated in healthcare information research, they come out even higher than the (general) public in saying they want notice and consent. They believe that expressed consent is the right thing.
{“Professor Westin’s latest survey on public attitudes towards research access to health information confirms what has always been found when Americans are asked about their privacy rights: they do not want researchers to see or use their sensitive personal health information without consent. What’s new is that many groups of Americans who are especially insistent about being asked for consent: African Americans, people with incomes of 35-49K, college grads, single women, those who used sought treatment for mental illness, those who had taken genetic tests, those with long-term health problems, those with sexual problems, and people aged 50-64. This survey should be a wake up call to all researchers and the Administration. They are trying to open access to every American’s medical records for research by administrative fiat without a national debate because they know the public would never agree.”~Dr. Deborah Peel, Patient Privacy Rights}

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