Personal Privacy and Common Goods: A Framework for Balancing Under the National Health Information Privacy Rule

In this Article, we discuss how these principles for balancing apply in a number of important contexts where individually identifiable health data are shared. In Part I, we analyze the modern view favoring autonomy and privacy. In the last several decades, individual autonomy has been used as a justification for preventing sharing of information irrespective of the good to be achieved. Although respect for privacy can sometimes be important for achieving public purposes (e.g., fostering the physician/patient relationship), it can also impair the achievement of goals that are necessary for any healthy and prosperous society. A framework for balancing that strictly favors privacy can lead to reduced efficiencies in clinical care, research, and public health. We reason that society would be better served, and individuals would be only marginally less protected, if privacy rules permitted exchange of data for important public benefits. In Part II, we explain the national health information privacy regulations: (1) what do they cover?; (2) to whom do they apply?; and (3) how do they safeguard personal privacy? Parts III and IV focus on whether the standards adhere, or fail to adhere, to the privacy principles discussed in Part I. In Part III, we examine two autonomy rules established in the national privacy regulations: informed consent (for uses or disclosures of identifiable health data for health-care related purposes) and written authorization (for uses or disclosures of health data for non-health care related purposes). We observe that the informed consent rule is neither informed nor consensual. The rule is likely to thwart the effective management of health organizations without benefiting the individual. Requiring written authorization, on the other hand, protects individual privacy to prevent disclosures to entities that do not perform health-related functions, such as employers and life insurers. In Part IV, we examine various contexts in which data can be shared for public purposes under the national privacy rule: public health, research, law enforcement, familial notification, and commercial marketing. We apply our framework for balancing in each context and observe the relative strengths and weaknesses of the privacy regulations in achieving a fair balance of private and public interests