From the National Academies: "A new data network that integrates emerging research on the molecular makeup of diseases with clinical data on individual patients could drive the development of a more accurate classification of disease and ultimately enhance diagnosis and treatment, says a new report from the National Research Council." (Courtesy of DocuTicker's DocuBase.)
Careful readers will note that the NA press release highlights the goal of a new taxonomy, while the report itself emphasizes the benefits to health care of layered data integration. Nor does the press release explicitly mention privacy or consent issues, alluding only to the report's recommendation of "gradually eliminating institutional, cultural, and regulatory barriers to widespread sharing of individuals' molecular profiles and health histories while still protecting patients' rights." The report itself is more forthcoming, particularly on pages 56-58 of chapter 4, "How Do We Get There?," where it addresses "the ethical and policy challenges" of an "Information Commons" populated with individuals' molecular data, medical histories, profiles of social and environmental environments, and medical outcomes.
Clearly, the authors are queasy about privacy concerns, in two competing respects. First, they view current rules for handling of patient information (fundamentally, HIPAA) as ineffective and obstructive of progress. The vision is for a "commons," after all, accessible not only to academic, but also commercial researchers. Second, even if participating researchers and practitioners can demonstrate trustworthiness, data security remains fraught with potential vulnerabilities. The cultural barrier, a euphemism for personal expectations of privacy, may very well become the challenge most easily adjusted to support the project.