President Obama’s Commission for the Study Bioethical Issues released a report few days ago titled ‘Privacy & Progress in the Whole Genome Sequencing‘. The report addresses best ways to protect privacy of individuals whose DNA is sequenced yet allow for progress and effective use and sharing of the resulting data for the advancement of science.
The lowering of the cost of genome sequencing kits is increasing the demand for whole genome sequencing but raises the concerns of securing the privacy and confidentiality of the data resulting. The potential leaking of such data could pose risks not only to the individual that underwent the test but his/her family members as well. The risks could be the misuse of the genetic information for example publicizing genetic information that could affect individual’s acquisition of a job or a marriage partner.
Also much of the genetic data arising now may not make a lot of sense to scientists let alone lay people, since the technology is still evolving. But in the future such data could uncover new disease links or mutations that need to be relayed to individuals who underwent the testing. These individuals are still under the threat to have their privacy and that of their relatives jeopardized.
Also the fear of ambition and financial incentives overriding ethics has been raised in the report with scenarios of individuals selling samples, such as saliva on cups left in restaurants, to commercial companies sequencing and decoding genetic information.
The report stated there are variation across the United States in regards to protective laws for privacy and confidentiality of whole genome sequencing data. It proposed recommendations to better protect individual rights to consent and privacy on one hand yet allow the potential of use of such data for advancement of science and betterment of health.
To read more about the recommendation please visit Privacy and Progress in Whole Genome Sequencing