passing. Some barriers, such as the need to maintain patient privacy, are common to all organizations, but others apply more strongly to some organizations than others. For example, researchers in private industry (and their partners or potential partners in academia) are more concerned about protecting proprietary information, while academic researchers are more interested in keeping data under their control to generate publications and professional acclaim. These differing incentives complicate efforts to disseminate data more widely, as described in the chapters on models for sharing clinical data (Chapter 4), standardization (Chapter 5), and changing in the culture of research (Chapter 6).


Jennifer Geetter, a partner at McDermott Will & Emery, talked about patient privacy considerations and regulations as barriers to data sharing. Despite a desire to see innovation and progress in biomedical research, the public remains very concerned about a potential loss of privacy. However, the exact nature of these concerns is not well understood, Geetter observed. Are people afraid their personal information will be used in ways they do not intend? Are they afraid their information will be used in ways that have adverse employment or insurance consequences? “It is difficult to know,” said Geetter, “but everyone out there perceives a real privacy concern.”

Geetter described two opposing approaches to privacy protection. The first holds that access to information should be very restricted with a presumption of nondisclosure. For example, the classic doctor–patient relationship assumes this model, which obviously is a significant impediment to data sharing. The second model balances confidentiality with socially useful sharing and disclosures of data using generally accepted rules for doing so. The public is ambivalent about which of these models to adopt, said Geetter. Despite this ambivalence, Geetter encouraged researchers to involve patients in data-sharing decisions. When patients are asked to share their information, are given a voice in that process, and are thanked for their participation, they are more likely to choose to share health information, she said.

A good deal of legal uncertainty exists regarding privacy regulations and the associated impacts on data sharing, said Geetter. At the time of the workshop, several regulations were being developed and revised that affect data sharing. Release of modified rules promulgated under the

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