Genetic Paparazzi: Beyond Genetic Privacy

Abstract

The domain of accessible information about celebrities, political leaders, and other public figures is expanding as technology evolves, placing new stresses on already uneasy legal boundaries around their privacy. The availability of cheap, fast, and informative genetic sequencing technologies, combined with growing public interest in genetic information, make it likely that we will soon witness paparazzi carrying swabs and sterile tubes in search for genetic materials connected in some way to the public figures they pursue. In a world in which genetic paparazzi are not only a possibility, but a probability, courts will inevitably be asked to determine the legal status of genetic materials and information obtained from public figures without consent. The genetics of public figures serves as a useful test case of the legal framework governing genetics and privacy because public figures are at the same time beneficiaries of more rights than most of us — in the form of rights of publicity — and fewer rights — in the form of diminished expectations of privacy.

When disputes involving genetic paparazzi ultimately reach the courtroom, judges will have to confront scenarios that touch on fundamental questions regarding the nature of genetics and its relationship to concepts of personhood and identity, property, health and disease, intellectual property, and reproductive rights. While the question of what courts will decide is intriguing, this Article moves beyond such predictions to focus on how resulting court decisions in seemingly narrow cases may have broad and potentially harmful impact. Despite the complexity of the legal issues that such suits will implicate, the constraints of existing law make it likely that courts will address such disputes largely through the lens of traditional privacy and publicity rights. In this Article we argue that pursuing genetic paparazzi cases through the narrow lens of existing privacy and publicity law would ignore the multidimensional nature of genetic materials and information, leading to unintended and problematic consequences for how the law approaches genetics. We go on to highlight additional aspects of genetic materials and information that policymakers, courts, and lawyers ought to consider when responding to media excursions into the genetics of public figures so as not to impede other genetic interests that might be implicated.