Subpeona of Data Provided by Research Participants Under Confidentiality Agreement Raises Concerns

by Sabrina Ly

Thumbnail-Sabrina-Ly.jpg On February 25, 2013, an article was published in The Dartmouth describing the implementation of its Committee for the Protection of Human Subjects. The purpose of the committee is to answer ethical questions and review proposals regarding human subjects participating in research at Dartmouth College. The committee is comprised of experts and community members “who analyze the risk posed to participants by Dartmouth-affiliated researchers’ studies.” The timing of its creation could be coincidental, but may have been in response to legal action taken against Boston College subpoening confidential data provided by research participants in the “Belfast Project” in 2012.

Prior to interviews taking place as part of the Belfast Project, researchers promised interviewees that their identities and information contained in the transcripts would not be released until after their deaths. However, upon discovering the existence of the transcripts, British law enforcement worked with the U.S. Department of Justice to subpoena the transcripts to use in its criminal proceedings. This raised significant ethical issues pitting the needs of law enforcement against the need for participant confidentiality in certain research that benefits the public.

The problem of subpoenaing confidential human research information is further elaborated in an article recently published in Issue 14.1 of the Minnesota Journal of Law, Science and Technology. In Certificates of Confidentiality: Protecting Human Subject Research Data in Law and Practice, Wolf, et al., discuss the importance of enforcing a certificate of confidentiality in human research studies. Confidentiality in order to obtain information from human subjects during research is vital to progression and understanding in health, science and many other fields. Often research requiring a promise of confidentiality involves difficult and controversial subjects that would be nearly impossible to study without an assurance of confidentiality.

A certificate of confidentiality encourages individuals to volunteer information they might not otherwise be willing to disclose by protecting their identity and privacy. By breaking the promise of confidentiality, the subpoenaing of the “Belfast Project” threatens academic freedom, and may deter future research participants from providing accurate personal information. Such reluctance to provide information could harm the work of researchers who might otherwise advance understanding and provide valuable insights on difficult issues. One example in which research is difficult without confidentiality is the willingness of individuals to share information about their sexuality, sexual behaviors, or drug-using behaviors. In past studies, researchers have been able to use this information to derive how HIV spread and implement methods to prevent the spread.

The broad benefits to society of upholding academic freedom, the right to privacy, and freedom of information, far outweigh any claim law-enforcement may have to subpoena confidential research data. While an individual prosecution may be important, the damage caused by allowing such a breach of confidentiality could greatly hinder society-benefiting research. The importance of enforcing certificates of confidentiality to prevent the criminalization of human research subjects is significant.

Boston College has filed a petition for a writ of certiorari in the Supreme Court to appeal the First Circuit’s ruling upholding the subpoenas.