By Claire E. Wakefield, Lucy V. Hanlon, Katherine M. Tucker, Andrea F. Patenaude, Christina Signorelli, Jordana K. McLoone and Richard J. Cohn Genetics research often pushes the boundaries of science, and by the far-reaching nature of genetic information, pushes us out of our comfort zones to consider new psychosocial, ethical, and legal scenarios. Conducting genetic…
By Michelle Meyer Proposed changes to the federal Common Rule would ask patients for the first time to decide whether to allow their non-identified, leftover tissue to be used for research or thrown away. For that choice to be meaningful, the public needs to be aware of the nature, risks, and benefits of biospecimens research,…
By Arthur Caplan Bill of Health Contributor Arthur Caplan has a new article in Project Syndicate: There should no longer be any doubt about whether humans will one day be genetically modified. A new tool – called CRISPR – is already being used to edit the genomes of insects and animals. Essentially a very sharp molecular knife,…
By Benjamin E. Berkman, JD, MPH While promising to eventually revolutionize medicine, the capacity to cheaply and quickly generate an individual’s entire genome has not been without controversy. Producing information on this scale seems to violate some of the accepted norms governing how to practice medicine, norms that evolved during the early years of genetic…
By Nanibaa’ A. Garrison, Ellen Wright Clayton and Ingrid A. Holm Based on today’s publication of the paper A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States in Genetics in Medicine. The recent Notice of Proposed Rule Making (NPRM) issued by the Office of Human Research Protections proposes to…
By Maayan Sudai A few weeks ago I ran across this BuzzFeed post, telling the story of Corey Mason, a 14 year old male to female Trans teenager who was filmed getting her first pack of estrogen hormones. Her mom Erica, who uploaded the video to Facebook and YouTube, spurred a social-media discussion on the…
HLS Health Law Workshop: Julian Savulescu October 19, 2015, 5:00 PM Lewis International Law Center, Room 214A 1557 Massachusetts Ave, Cambridge MA 02138 Download the papers: “The Ethics of Gene Editing” “Mitochondrial Transfer Is Transplantation, Not Genetic Engineering” Julian Savulescu is Uehiro Chair in Practical Ethics, Director of The Oxford Centre for Neuroethics, Director of the Oxford…
By Maayan Sudai Dutee Chand is an Indian athlete that has been in the focus of a recent drama in elite sport. Chand, a gifted athlete and champion, was suspended from participating in competitions by the International Association of Athletics Federations (IAAF), after she was found to have high levels of testosterone. A biological condition…
By Arthur Caplan Bill of Health Contributor Art Caplan has a new article in EMBO Reports: The term “CRISPR” has gained a lot of attention recently as a result of a debate among scientists about the possibility of genetically modifying the human germ line and the ethical implications of doing so. However, CRISPR is not just a…
By Zachary Shapiro While all scientific research produces data, genomic analysis is somewhat unique in that it inherently produces vast quantities of data. Every human genome contains roughly 20,000-25,000 genes, so that even the most routine genomic sequencing or mapping will generate enormous amounts of data. Furthermore, next-generation sequencing techniques are being pioneered to allow…
