Monthly Archives: November, 2012
Less than a year after its release, the Commission’s report, Moral Science: Protecting Participants in Human Subjects Research, is having a noteworthy impact in the research community. Recently, stakeholders have taken concrete steps to implement two of the Commission’s recommendations, namely, those concerning accountability through public access and promoting community engagement. As part of its [...]
A mother of three young children enrolls in a breast cancer research study in which researchers will sequence her entire genome to look for variants that might contribute to developing breast cancer. As researchers analyze her genome, they discover that she has markers associated with hereditary non-polyposis colorectal cancer (HNPCC), a hereditary syndrome that is [...]
By now the story of Susan Reverby’s discovery of John Cutler’s papers is well known. In 2010, she revealed details of the Guatemala studies from the Public Health Service (PHS) doctor’s files, triggering an avalanche of media attention. President Obama apologized to the President of Guatemala, and then directed the Presidential Commission for the Study [...]
If your doctor recommended that you have your whole genome sequenced, you would likely have a lot of questions, including: Where will my data be stored? Who will have access to them? Will they be secure? Can I control who sees the information gathered from my data? How will my information be kept private? Is [...]
In Administrative session yesterday, Members noted that the Commission is dealing with incredibly complex and difficult issues and that it is covering new ground in pediatric research ethics. Members agreed that the Commission must take the time it needs to address this topic carefully, thoroughly and transparently.
Dr. Georges Benjamin, executive director of the American Public Health Association, will speak to the Presidential Commission for the Study of Bioethical Issues at its eleventh public meeting being held today and tomorrow in Chicago.
The Commission begins its meeting in Chicago by taking a closer look at the work of one of its predecessor Commissions – the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research – and the practical impact of its work today. The National Commission’s 1977 Report, Research Involving Children, laid the [...]