21
May2009

Posted by Catherine Rogers, marketing coordinator

As our three planning committees continue to develop content for the 2009 Advancing Ethical Research Conference, the theme, privacy, continually arises as a touchstone for the present—and future—of research.

But you don’t have to be involved in research ethics to be exposed to the questions swirling around these topics. Yesterday, the Boston Globe reported that the medical records of 66 patients from Massachusetts General Hospital were left on a subway train in March. The group members, many of whom are HIV-positive, claim that their Social Security numbers, doctors, diagnoses, and billing details were exposed by an employee who had taken the records home one weekend, only to lose them on her Monday-morning commute. While four have decided to sue the hospital, the remaining dozens have yet to decide their course of action.

In addition to the stress the personal security breach caused, the issue of medical privacy is at the forefront of the plaintiffs’ claim. While the stigma of being HIV-positive has retreated from the don’t-ask-don’t-tell attitude, there’s still a heightened level of privacy when it comes to the disease. Does that mean that this group is entitled to more damages than, say, if they were instead diagnosed with cancer? What if the disease was more sensational? If it were instances of swine flu attached to medical histories and identifying factors, how might we have reacted differently? Furthermore, if control is an issue, wouldn’t this be one argument for digitizing medical records?

I’m no expert here, but having been exposed to the inner workings of our planning committees, where I hear people debate the level of priority privacy should have, and that there are different views of privacy among different generations of people, I find that I’m more sensitive to these questions. I’d love to continue this discussion, so please leave a comment below to share your insight.

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