By Effy Vayena and Alessandro Blasimme In January 1999, Scott McNealy, CEO of Sun Microsystems (now part of Oracle Corporation), announced that we should no longer be concerned with privacy, since consumers ‘have zero privacy anyway’ and should just ‘get over it.’ His argument, that in the era of information technology we have become unable…
This post is part of Bill of Health’s symposium on Critical Studies of Citizen Science in Biomedical Research. Challenging the lay-professional divide in portrayals of citizen science, Vanessa Heggie examines a case study of an expedition to the Antarctic in the 1950s, where participants were at once researchers, research subjects, experts, and technicians. Background on the…
We are pleased to host this symposium featuring commentary from participants in the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences event, “How Patients Are Creating Medicine’s Future: From Citizen Science to Precision Medicine.” Below, Susan M. Wolf tees up the issues. All posts in the series will…
By Barbara J. Evans This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here. The citizen science movement goes beyond merely letting people dabble in science projects. It involves giving regular people…
By Jason Bobe This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here. Jason Bobe will be participating in an NIH videocast on return of genetic results in the All of Us…
By Ernesto Ramirez This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here. Personal health data has historically been controlled by the healthcare industry. However, much has changed in the last decade.…
By Kingshuk K. Sinha This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here. While the promise and potential of precision medicine are clear, delivering on that promise and making precision medicine…
By Brad Segal In my last post I characterized how overdoses from the surging opioid epidemic have become the fastest-growing cause of mortality among organ donors. In this update, I raise one potential consequence with ethical and policy implications: so-called donor-derived infections. To be clear, I focus primarily on organ recipients as deaths from drug overdose,…
By Seán Finan Last week, a patent application in India was refused, apparently on the basis that the invention under review could have been used to counterfeit money. This practice of denying patents on the basis of public policy or morality is almost as old as the practice of granting patents. For example, the State of Monopolies…
By Donna M. Gitter, based on Professor Gitter’s presentation at the Petrie-Flom Center’s 2016 Annual Conference, “Big Data, Health Law, and Bioethics,” held May 6, 2016, at Harvard Law School. Cross-posted from the Hastings Center’s Bioethics Forum. The Icelandic biotech firm deCODE Genetics has pioneered a means of determining an individual’s susceptibility to various medical conditions with 99 percent…
