Privacy Issues in Medical Research
Human subjects research, especially medical research, is a trade-off between the rights of the individual and those of society. We face the same trade-off in some privacy issues. Research generally does not affect decisional privacy or physical privacy, although there are exceptions discussed in the Public Health section. Research rules do affect informational privacy for certain kinds of research that involve the analysis of databases of clinical information where individual consent to look at the information would be burdensome or impossible. The most obvious example is the records of dead people. Historically, the right to privacy died with the individual. This has been modified by statute for medical information and by custom for certain communications, such as those between an attorney and her client. HIPAA allows researchers to get access to the medical records of dead people without getting permission from the relatives or the estate. This is because getting such permission is very difficult and time-consuming. In many cases it is impossible because there is no way to find the next of kin or because there are not any next of kin. The researchers much show that they are only going to use the information for research, that access to the records is the best way to do the research, and, if it is not certain, that the person is dead.