Advances in bioinformatics and genetics have made collectionsof biologic specimens and medical information valuable for pharmacogenomicresearch.1 As a result, many large-scale data banks for genomicshave emerged in the United States and abroad.2 These large setsof tissue and blood samples and health data have profound medical,legal, ethical, and social implications for privacy, individualand group autonomy, and benefits to communities.3,4,5 In theUnited States, a number of biotechnology companies are amassingsamples millions of them, in some cases in privatetissue banks.6 Many of these companies act as brokers of tissueand of health . . . [Full Text of this Article]
Consent Forms and Permission
Institutional Review Boards
Property Rights and Benefits to the Community
The Charitable-Trust Model
Structuring the Trust
Funding the Trusts
Conclusions
Source Information
From the Kennedy School of Government, Harvard University, Cambridge, Mass. (D.E.W.); and Massachusetts General Hospital, Boston (R.N.W.).
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