National forum will debate 'third party' research data

By Erin Lucero
Office of Development, School of Medicine

RICHMOND, Va. – Increased federal scrutiny of research involving human subjects and heightened concerns over personal privacy have highlighted a host of legal, ethical and policy questions that have never been fully explored. A number of issues have arisen concerning the rights and risks of "third parties" – the parents, spouses, offspring, caregivers, colleagues and siblings who may be affected by decisions made and information provided by research subjects.

The topic will be discussed and debated publicly on March 9 at a Virginia Commonwealth University forum that will draw leaders in the fields of research, ethics, public policy and patient and family rights. Forum organizers expect the discussion to serve as a first step toward establishing a consensus among researchers about third party data collection, leading to recommendations that could be considered by universities and federal regulatory agencies.

"For at least the past 50 years, it’s been a standard practice for researchers to collect information about the health and behavioral history of a subject’s family," said Lenn Murrelle, Ph.D., forum organizer and co-director of VCU’s Mid-Atlantic Twin Registry. "Such information, for example, was essential in proving that a family history of breast cancer is one of the most important risk factors a women can have for developing the disease herself."

While family history data is not critical to all research, this type of information is essential and routinely collected for research projects in many fields. Forum organizers point out that though the issue of third party data often is discussed in the context of genetic research, the issue has the potential to impact all fields of research that ask about the behavior or health of a parent, spouse, sibling or other relative. Because current regulations are not specific about who other than the primary subject must provide consent, some U.S. researchers have chosen to discontinue collecting third party data until the issue is resolved.

Critics of the current practice argue that collecting information about a third party’s behavioral or medical history could be an invasion of their privacy. For that reason, they maintain that investigators should receive consent from third parties before collecting such information. Others argue that in this complex, contemporary world, perfect confidentiality is not possible or absolutely protectable and is not required in any other field. They cite the ready availability of credit information as an example of access to private information that is widely tolerated.

"Many members of the scientific community fear that in a rush to extend regulations that would require third parties to consent to participate as subjects of research, we could overburden and stifle important research," said Murrelle. "Without the ability to collect third party data under reasonable safeguards, some researchers say that many valuable projects could be slowed or even halted.

"As with all research, society must weigh the risk to an individual against the benefit that is gained for individuals as well as society as a whole. All individuals have the right to expect that their personal and health information will be closely guarded and respected."

The Carnegie Foundation for the Advancement of Teaching lists VCU among the top research universities in the country. Each year, VCU faculty members attract about $120 million in sponsored research funding.