The Presidential Commission for the Study of Bioethical Issues published a report on whole genome sequencing, Privacy and Progress in Whole Genome Sequencing, in October 2012. At its January meeting in Miami, Fla. the Commission finalized its work on a report on the ethics of medical countermeasures research with children, which will be released soon.
So, what’s next?
As an advisory body, the Commission takes on timely and pressing bioethical issues.
The Commission’s topics of study come from two sources.
The Executive Office of the President and the executive departments and agencies can ask the Commission to study a particular subject. The Commission’s report on the Public Health Services’ STD experiments, “Ethically Impossible” STD Research in Guatemala from 1946 to1948, and the Commission’s report on protections for human subjects in research, Moral Science: Protecting Participants in Human Subjects Research, were written as the result of a charge that came directly from the Executive Office of the President. You can view the official charge here.
Alternatively, the Commission can use its expertise to identify a topic to study based on issues Commission members feel are timely and important, as was the case for the Commission’s recent report Privacy and Progress in Whole Genome Sequencing. The report’s topic is certainly timely, as the concept of identifiability continues to be explored and debated in the scientific literature as do the issues of access to and use of genomic data.
At the Commission’s meeting in Miami, Commission Chair Amy Gutmann, Ph.D., announced that the Commission will study the ethical implications of incidental findings. Incidental findings are data gleaned from medical procedures or laboratory tests that were beyond the aims or goals of the particular laboratory test or medical procedure. This topic came out of the research the Commission did for its Privacy and Progress report and is an area that the members agreed deserved more of the Commission’s time and attention.
At the January 2013 meeting, Commission members began to discuss several fields in which incidental findings raise serious ethical questions, such as neurology and genetics, in addition to various settings such as clinical and research. The implications of how incidental findings are handled affect research participants, patients, consumers, and healthcare professionals. The Commission’s bioethical inquiry likely will include the importance of what patients and participants should be told by healthcare professionals not only after a procedure or a test is performed, but before as part of the informed consent process.
Stay tuned for more information regarding the Commission’s next meeting and first discussion of incidental findings, April 30 and May 1, 2013 in Washington, D.C.