Recently, federal and state policy makers have been debating how to ensure that laws protect privacy while allowing valid research uses of medical information. Opinions differ on whether researchers should always be required to seek patient consent. Here are views from two Carolina faculty members. If information collected by researchers could be used to identify individuals, then they become not just patients, but also research subjects. In my view, researchers should have to obtain these subjects' informed consent in nearly all cases.
Consent is an educational process for both potential subjects and researchers.
It requires researchers to explain and justify their projects to patients and the public in plain language. This is not always easy to do, but it is important. Health research is meant to benefit future patients, and the consent process helps equip researchers and potential subjects to be partners in the research enterprise. Much of the public is unaware that their medical records might be used for purposes other than their treatment, and is likewise unaware of the safeguards in place to ensure that information used in health research is kept confidential. Besides consent to specific studies, I support greater public education about health research, through pamphlets distributed to patients at academic medical centers and other research sites, as well as through public forums.