Tag Archives: SACGHS

Oversight Report on Genetic Testing

sacghs_report.jpgWell, as soon as the President signs the GINA legislation, we will be in a new era in genomics in the US–as far as I’m concerned. There were plenty of things I would not have participated in before, from specific aberrant gene testing, to research projects, to having a personal genome done. And I would have advised my family against it as well, since their test results could ripple though the family. But now those things are back on the table. I’m not saying I will do it, actually. But that the possibility is there now and I had written it all off before.

But we aren’t done yet. We need to brace ourselves for a widened era of personal and consumer testing. The Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS) was charged with creating a study:

U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services (pdf–large pdf–almost 300 pages).

I have just learned about its recent completion, and quite honestly, have not read the whole thing. But one section jumped right out at me:

To meet the educational needs of health professionals, public health workers, patients, and consumers, HHS should support efforts to identify education or training deficiencies in each of these groups and support research and development of effective clinical decision support systems. In addition, FDA should prepare a guidance document articulating the scope of its regulation of clinical decision support systems.

We have got to get people trained up to understand genomics. We’d be happy to help :)