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.^3-5 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 health data for a wide range of researchers.⁶ Although this brokering has sparked ethical concerns,² the role of academic medical centers as suppliers for these private “biobanks” has received little attention.