PROPERTY REDUX. OWNERSHIP OF HUMAN TISSUE AND THE GOVERNANCE OF POST-GENOMIC RESEARCH BIOBANKS

Abstract

Biobank-based genomic research is considered instrumental to realize Personalised Medicine and considerable benefits for diagnosis and therapy of many common complex diseases. It raises manifold ethical and regulatory challenges which are discussed extensively, the main focus being on adaptations of Informed Consent to the emerging research context. This study highlights challenges to the strongly individualistic focus of classical research ethics in confrontation with biobank development. The debate on adequate protections for individual donor-participants tends towards deflationary accounts of participant rights, in which in particular the dimension of potential property in human tissue and genomic information is undervalued. Criticizing the common bioethical and legal stance that there can and should be no property in the human body and its parts, the close conceptual connections between privacy, property and consent underlying the protection of a more substantive version of participant integrity are emphasized. While ultimately the framework of traditional, in particular individual property rights is ill-suited to safeguard participant and public interests in research, property discourse is fundamental to advance discussion on the direction biobank ethics and governance should take by 1) taking serious the reordering of individual, group and societal interests in biobank research, 2) clarifying strength and limits of claims to “autonomy” and 3) refocusing to public or common goods biobank research should provide. These foundational insights are applied to an emerging normative model beneath biobank governance in which implications for the future role of consent and participant involvement in large-scale digitalized research projects are outlined.