Despite the recent findings that have shown individuals donating genetic information are not guaranteed anonymity due to lack of regulation over the use of genetic information, all signs indicate that widespread whole genome sequencing will be the norm in the not-so-distant future.
As whole genome sequencing continues to become a larger component of medical progress, federal regulations will inevitably be established to regulate and protect the privacy of individuals’ genetic information.
In October 2012, the Presidential Commission for the Study of Bioethical Issues made strong recommendations regarding whole genome sequencing, a tell-tale sign that it's on the horizon of becoming increasing common. The commission addressed concerns over the competing interests of personal privacy and the improvement of medicine when it comes to the use and protection of genetic data collected through sequencing.
Not only did the commission issue recommendations for regulation, but it publicly acknowledged the importance that whole genome sequencing will play in health research and medical progress. And, most importantly, the commission stated that the main benefactors of widespread whole genome sequencing will be members of the public through improved health treatment and disease prevention.
Yet, the commission also acknowledged that changes in federal regulation need to occur in order to establish the necessary public trust to ensure that individuals will be willing to submit to genetic sequencing. State regulations need to be addressed as well, since current state regulations vary widely.
It is likely only be a matter of time before state and federal regulations are put in place to protect the use of genetic data, which will secure individual privacy while paving the way for the maintenance and informatic analysis of large-scale genetic databases to discover breakthroughs in the practice of medicine.
In our next blog post, we will be breaking down the recommendations put forth by the Presidential Commission for the Study of Bioethical Issues on the subject of regulating the use and protection of genetic information.
You can read the full October 2012 commission report, titled "Privacy and Progress", by clicking here.