Law for Benefit-Sharing
Patrick F. Terry
President, PXE International, Inc. Co-founder, Director of Consumer Advocacy, Genomic Health, Inc.
The lay advocacy movement has entered an era of potentially novel service to individuals affected by genetic conditions. Fueled by leaps in genetics, genomics, and information technology, this potential has a powerful model in PXE International, which evolved from the concern of two parents into a single point of contact for an international research consortium, an active multi-cultural membership, over fifty internationally networked patient support offices, and a patient registry and BioBank. With a gene patent and a myriad of peer-reviewed publications authored, PXE International is in a position to require that the research enterprise serves the paramount stakeholders, individuals with PXE and their families.1-4
The story of PXE International is a story of two determined parents with no scientific background who want to give their children the best possible life. Their commitment, strategic planning abilities, organisational skills, and ability to understand the ambient milieu built a unique international alliance of interested persons. They have acted not only as advocates for individuals affected by PXE but as mentors for advocates for other conditions. They author papers, raise their voices in policymaking, work towards broader engagement of disenfranchised communities, and participate in the founding of a California based biotechnology company.5
A significant aspect of the success of PXE International has been a legal system that allows the patenting of genes.6 This paper will describe intellectual property law and biotechnology applications in the light of PXE
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.