The Charitable Trust as a Model for Genomic Biobanks

Abstract

Advances in bioinformatics and genetics have made collections of biologic specimens and medical information valuable for pharmacogenomic research.1 As a result, many large-scale data banks for genomics have emerged in the United States and abroad.2 These large sets of tissue and blood samples and health data have profound medical, legal, ethical, and social implications for privacy, individual and group autonomy, and benefits to communities.35 In the United States, a number of biotechnology companies are amassing samples — millions of them, in some cases — in private tissue banks.6 Many of these companies act as brokers of tissue and of . . .