The availability of large-scale human genomic data sets raises questions regarding their proper collection, use and governance. The Presidential Commission for the Study of Bioethical Issues is currently focusing on these issues and is seeking input from medical professionals , scientists, ethicists, patient groups and the general public.
Specific areas of interest to the Commission include:
- Privacy implications for individuals, research subjects, patients and families
- The views of different stakeholder groups about genetic/genomic data collection and privacy
- Evolving societal concepts of privacy and the impact of social media
- Ways to protect privacy when amassing large volumes of sensitive information
- Balancing individual vs. societal interests
- Controlling access to genomic data
- Health information technology considerations
- Law enforcement/judicial access to and use of genomic data
Written comments should be submitted by May 25, 2012.