Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Recent expansions of federal and state law enforcement databanks to include DNA samples and profiles of innocent persons threaten individual privacy, impose unjustifiable costs on society, and may undermine our pursuit of justice. The move to permanently retain DNA from arrestees and proposals for a universal database should be vigorously opposed on matters of principle, legality, and practicality.

. On June 13, 2013, the Supreme Court issued a unanimous decision in Association for Molecular Pathology v. Myriad Genetics, holding that a naturally occurring DNA segment that has merely been “isolated” is not patent eligible, and effectively overturning a longstanding policy that had allowed for patents to be issued on thousands of human genes. Drawing largely on the expert testimony and arguments presented during the court proceedings, this paper provides an overview of the discovery and patenting of the BRCA1 (...) and BRCA2 genes at issue in the case, the impacts of gene patents on biomedical research and innovation and clinical practice, and the legal analysis presented by the plaintiffs throughout the case for how patents issued on genes violate the Patent Act and the U.S. Constitution. Finally, it discusses how the Court’s decision in this case marked an extraordinary victory not only for the plaintiffs directly involved, but more generally for women, patients, researchers, civil liberties, and the future of medicine. (shrink)

On November 2, 2004, California voters elected to radically expand their state criminal DNA database through the passage of Proposition 69. The approved ballot initiative authorized DNA collection and retention from all felons, any individuals with past felony convictions – including juveniles – and, beginning in 2009, all adults arrested for any felony offense. This dramatic database expansion threatens civil liberties and establishes a dangerous precedent for U.S. criminal databases.