between the risk of disclosure and the benefits of research. Gutmann responded that earlier workshop sessions had illustrated the benefits of using education records for research (see Chapter 3). DeStefano said that, in the partnership model, education agencies and researchers discuss the specific benefits of particular research projects, rather than considering the general benefits of research to society; she observed that the University of Illinois institutional review board had made note of these specific benefits when reviewing research partnership proposals.
Ness said that the Institute of Medicine committee extensively discussed the risks and benefits of research using individual health information. The committee commissioned surveys showing that the public is “hungry” for health information, and thinks that the United States should remain the world leader in generating new medical knowledge (Westin, 2007). She suggested placing the new knowledge resulting from research in “a very central position” when weighing research benefits and privacy risks. Levine agreed that the public increasingly recognizes the importance of health as a public good, saying that the public should view education in the same way.
Boruch said that an early report on privacy and confidentiality by the Committee on National Statistics (National Research Council, 1979) included an analysis of how people react to a request for personal information presented in different ways. He suggested that the survey of public attitudes commissioned by the Institute of Medicine Committee might be a valuable resource for understanding how to frame such requests, which is a challenging task across fields of social science research; Ness said the survey is publicly available (Westin, 2007).
Schneider urged the American Educational Research Association to continue providing professional development on keeping data confidential. While acknowledging her fear that a breach of individual identity was inevitable, she said it was critical to educate the research community about confidentiality and how best to safeguard it.