The Burgeoning “Biorights Movement”: Its Legal Basis, What’s at Stake, and How to Respond

Abstract

The advent of genetic and genomic technologies has the power to transform the understanding, prevention, and treatment of disease on a scale unprecedented in modern medicine. The promise of the era of precision medicine risks being tempered by the emergence of what is increasingly being referred to as the “biorights movement.” Of particular concern is the growing trend of individuals refusing to contribute their biological material to research studies absent some form of monetary compensation. Recently announced, but yet to be implemented, regulations seek to mitigate some of the potentially harmful and progress-impeding positions advanced by the biorights movement. The proposed changes to the legal and regulatory framework, however, do not sufficiently address the opportunities and challenges of the rapidly evolving patient-consumer landscape as it relates to personal genetic testing. Never before have patients been able to know so much about their genetic profile and the potentially valuable information their DNA contains from both a research and commercial perspective. Bolstered by numerous public policy justifications, this Note argues that legislative action needs to be taken that proscribes the ability of individuals to sell their biological material for research purposes.