Dr Jane Kaye presents at the US Presidential Commission for the Study of Bioethical Issues
HeLEX Director, Dr Jane Kaye, travelled to San Francisco in early February to speak at the US Presidential Commission on bioethics.
Dr Kaye stated “I would say I see the whole genome sequencing as another twist on things happening already on science. … What we need to do is make (privacy concerns) more nuanced and allow individuals to say how whole genomes are used.”
“We can no longer promise that individuals can remain anonymous as we had been able to do so previously when it comes to data sharing.”
“I think there are limitations on how far we can anonymize effectively, particularly when we get very rich data and we get whole genome sequence data. I think this can be detrimental to science, because in actual fact it’s the richness of the data that is so important.”
“What we need to do is make a conceptual shift away from simply thinking about privacy as something that has to be protected but rather to think of it as something that needs to be enacted through partnerships.”
For further detail, see the blog on the Presidential Commission website: http://blog.bioethics.gov/2012/02/02/experts-give-top-concerns-on-genetic-tests/
And as reported in Genetic Engineering and Biotechnology News (scroll down the page to "Securing Biobanks"): http://www.genengnews.com/analysis-and-insight/presidential-panel-wrestles-with-ethical-issues-linked-to-clinical-b-b/77899559/