Analyzing Annals: Research Ethics & Patient Consent
Two recent Annals of Internal Medicine papers (Corporate Research Ethics: Whose Responsibility? and The Importance of Purpose: Moving Beyond Consent in the Societal Use of Personal Health Information) address research ethics and participants' consent in the electronic age. In the first, a national survey explored public support for the use of electronic health information for research for differing purposes and under varying consent scenarios. The second paper discusses the recent experiment conducted by Facebook to see if manipulating the amount of positive or negative material users saw altered their emotional states, as measured by their own posts.
Use these Annals papers to:
- Review the wording of HIPPA legislation. Consider the intentions of this legislation. What does HIPPA say (or not say) about the use of your patients' electronic health information for research. Do you think the provisions are appropriate?
- Review the proposed uses of available electronic health information in the first paper's scenarios. Which ones would you be comfortable with for yourself?
- Do restrictions on the use of patients' electronic health information pose problematic (and needless) restrictions on research? What are the risks to allowing greater access to these records without consent? What are the potential benefits to society?
- Do you think companies such as Facebook should be allowed to do what it did?
- An editorialist discusses these issues and the problems and limitations to current research consent processes and outlines some changes that might help.