Opportunism: Regulating the Newfoundland Genome
Daryl Pullman, Andrew Latus
Faculty of Medicine, Memorial University of Newfoundland
While human genetic research has the potential to produce significant health benefits for individuals and communities alike, it also promises to produce substantial economic benefits for those who produce tests, therapies, and pharmaceutical products as a result of this research. It is now widely acknowledged that those who sponsor these studies have a moral obligation to redistribute a portion of the economic benefits that accrue from human genetic research to all legitimate stakeholders. Hence the HUGO Ethics Committee recommends that profit making companies dedicate a percentage of annual net profits “to healthcare infrastructure and/or to humanitarian efforts.”1
The HUGO recommendation is supported by moral principles of justice and solidarity. It serves as a significant general guide to those who want to ensure that appropriate benefit sharing arrangements are implemented. When it comes to working out the details of particular agreements, however, conceptual and practical ambiguities abound. For example “justice”, as the HUGO document rightly acknowledges, admits of a variety of interpretations and meanings, including compensatory, procedural, and distributive justice. While each could be relevant to the issue of benefit sharing, matters of distributive justice come to the fore. But distributive justice in itself represents a minefield of conceptual ambiguity and debate. How do we determine which stakeholders have a legitimate claim to any benefits that might accrue from genetic research, and who should be responsible to bear associated burdens? What is the appropriate basis of a fair and just share?
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.