Compliance-Limited Health Privacy Laws

Document Type

Book Chapter

Publication Date



Information privacy laws, also termed “ data protection” laws, regulate the collection, use, dissemination and retention of personal information. These laws – which in the United States are products of constitutions, statutes and common law – have the social dimensions I call “ compliance” and “impact” limitations. Any sort of law regulating conduct can have compliance and impact limitations; they are not unique to privacy law. Information privacy laws crafted to benefit all population groups more or less equally may fail to do so because individuals and institutions required by law to protect data by concealment and non-disclosure significantly fall down on the job when it comes to the information of certain culturally salient groups. Uneven obedience to privacy law that exposes individuals in particular disadvantaged social categories to harm – racial minority group members, low income group members or women, for instance – constitutes a “compliance” limitation of the law. Th e focus of this chapter is compliance-limited health information privacy laws. Health information privacy laws in the United States include federal privacy rules promulgated pursuant to the Health Insurance Portability and Accountability Act (HIPAA) (1996), the Genetic Information Nondiscrimination Act (2010) and state common law or statutes requiring medical confidentiality and special treatment of information relating to HIV/AIDS and pharmacy records. The availability of digital photography and communication technology creates special new perils for female patients’ privacy. The lure and consequences of noncompliance with privacy rules are worsened by the ability to upload patient images and information onto the Internet quickly and inexpensively. The popularity of digital media is a new and deep threat to the physical privacy of patients’ bodies and the confidentiality of medical encounters. I offer the case of Dr. Nikita Levy to demonstrate serious ethical problems confronting contemporary medical practice – problems far worse than patient-targeted Googling.

Publication Title

Social dimensions of privacy: Interdisciplinary Perspectives

Publication Citation

In Social Dimensions of Privacy 261 (Beate Roessler and Dorota Mokrosinska eds., Cambridge 2015)