The US Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) of the National Institute of Health (NIH) has held its final meeting before closure.
Established more than ten years ago to advise the Secretary of Health and Human Services, SACGHS examined a wide range of topics relating to the use of genetic and genomic technologies for health, and their medical, social, ethical, legal and economic implications. The US Government reportedly considers that the body has now ‘fulfilled its mandate’.
The final meeting considered the implications of affordable whole-genome sequencing, noting that the current ‘$10,000 genome’ actually carries an additional ‘$100,000 interpretation’ price tag. The cost of data analysis and interpretation massively outweigh the expense of actual sequencing at present, as well as taking much longer to perform, and this is likely to be the key barrier to clinical implementation.
Other issues raised included what to do about incidental (that is, unexpected) findings of serious, minor or unknown health significance, the need for potentially lengthy consent procedures, and the challenges of evaluating clinical validity and utility of sequencing data, providing workforce education and training, and addressing medical insurance and reimbursement issues.
The termination of SACGHS precludes a full investigation of the wide-ranging issues arising from the technological developments in DNA sequencing, but the PHG Foundation is already engaged in a programme to examine them in depth, with a particular focus on the implications for health care and society in the UK.