WASHINGTON, D.C. The Presidential Commission for the Study of Bioethical Issues will hold a public meeting February 2-3 in San Francisco, CA.
Following its report on Human Subjects Protections, the Commission will focus on three projects: medical countermeasures for children, whole genome sequencing and neuroethics.
Medical Countermeasures for Children:
On Jan. 10, Secretary of Health and Human Services Kathleen Sebelius asked the Commission for ethical advice on the development of medical countermeasures for children. The Commission is well aware that this issue garnered significant public interest last fall when another Federal advisory committee recommended pediatric testing of the anthrax vaccine. The Commission is honored that the Secretary has asked for its advice on this important ethical issue. The Commission is reviewing the request carefully and expects to begin work shortly on a timeline to deliver a report in late 2012.
Whole Genome Sequencing:
Since January 2011 the Commission has been following the pressing problems raised by the emergence of whole genome sequencing as an addition to clinical care and genetic research. According to recent media reports, it is highly likely that 2012 will be the year that the cost of whole genome sequencing will reach approximately $1,000. What once cost millions may soon cost less than many standard diagnostic tests today.
This will be welcome news for many, however the ethical questions are mounting. For example, the scale of collected and available genetic data raises the bar on data protection, privacy, consent, and counseling. The increased volume of data also increases the potential for use and abuse for nonmedical reasons.
Within this topic, the Commission is exploring issues that include how information is collected and stored, what constitutes informed consent and a host of intersecting privacy and access issues.
|Contact: Hillary Wicai Viers|
Presidential Commission for the Study of Bioethical Issues