Privacy vs. progress: research exceptionalism is bad medicine.

Abstract

Attitudes about privacy are changing in non-research settings, but these attitudinal shifts do not seem to be affecting the way regulators and ethicists think about the need to protect people from the risks of harm resulting from use of personal information in research studies (so-called "informational risks"). Increasingly, people routinely share personal information (including health information) online. And yet, a proposal has been made to restrict further the use of existing data, such as electronic medical records, for purposes of scientific research, even when personal identifiers have been removed. The disproportionate focus on "informational" risks in research is a form of research exceptionalism. This practice of treating research risks with greater caution than we treat other risks encountered in daily life is a legacy of past research abuses. Although understandable in historical context, this exceptionalism is harmful when it unreasonably interferes with scientific advances that could improve human health and welfare.