Center for the Study of Law and Society Jurisprudence and Social Policy Program

Translating knowledge of the genome into clinical applications will require the construction of large searchable repositories of phenotypic and genotypic information. These collections of DNA and biological information call for the sustained involvement of large numbers of research participants, and raise a host of difficult legal and ethical issues. Historically, the commercial value of medical records, bioinformation, and gene patents emerged after the regulatory structures of bioethics came into place. For some bioethicists and policy-makers, the norm of ‘benefit sharing’ has become a necessary corrective for a system seen to facilitate the appropriation of a valuable resource from research participants.

While benefit sharing should be applauded insofar as it attempts to submit relations of biocapital to new claims of distributive justice, the project is likely to fail both as a normative and practical matter without greater attention to issues of procedural justice: in particular, the constitution of distributive agency over resources for genomic research. Governance mechanisms in human subjects research are often justified as protections of research subjects from potential harms, but they also tacitly order the power to make distributive decisions over valuable collections of informational, genetic, and social capital. Benefit sharing as a discourse tends to settle political questions of distributive agency—the power to make distributive choices—in ways that exclude research participants from governing the resources they help to create.

The notion of ‘partnership governance’ presents a productive avenue for achieving a normative shift from ‘benefit sharing,’ a distributive value, to ‘power sharing,’ a procedural one. If implemented, partnership governance would empower participants to exert a share in distributive decision-making in return for contributing to the economic and social capital of the project. But it would also assign research participants with correlative obligations to other capital partners such as funders and researchers, and duties to uphold the charitable missions of biobanks. Legal principles and forms from within charitable trust law and corporate governance could help achieve ‘partnership governance,’ and address obvious challenges such as agency gaps and collective action problems.