Understanding Society

Tilburg University has been a reliable provider of high-quality education and research for more than eighty years. We specialize in the social sciences and humanities and we seek to make a structural contribution to society.

TILT seminar by Prof. Jorge Contreras

Property Rules, Liability Rules and Genetic Information


Under the laws of most western countries, there is no property interest in mere facts or information. Accordingly, significant biomedical research is conducted around the world using genetic, phenotypic and clinical data gathered from patients and research subjects, typically with the informed consent of the subject. Today, however, an alarming trend has emerged in the United States. Fueled by popular depictions of individuals disadvantaged by an unsympathetic research establishment (e.g., Henrietta Lacks), both individual litigants and policy makers have begun to speak of an individual property interest in genetic data.

Propertizing health data has potentially catastrophic implications for biomedical research, particularly if individuals have the right to withdraw data from in-progress studies or, worse, cause that data to be destroyed. In prior work, we have proposed that the property-like treatment of genetic data be replaced by affirmative regulations of researcher conduct (liability rules per Calabresi and Melamed) to protect individuals from abusive research practices. This approach would shift the landscape from one in which data-based research cannot occur without the consent of individual research participants to one in which research is presumptively allowed, but researchers face liability for overstepping the bounds of permitted activity. We explore two case studies in Denmark and the U.S. in which liability-based approaches have successfully been used to protect individual privacy while at the same time ensuring the integrity of the research enterprise.

Location: M 1003, Montesquieu Building

Registration: g.vdnmaagdenberg@tilburguniversity.edu

When: 15 May 2018 12:00

End date: 15 May 2018 13:30