One Monday last month, MJFF Senior Vice President of Research Partnerships Sohini Chowdhury found herself at the Center for Disease Control in Atlanta. On a panel of experts addressing the Presidential Commission for the Study of Bioethical Issues about the ethical implications of neuroscience research, Sohini discussed the potential its findings hold for the Parkinsonís community.
President Obama has asked the advisory board to examine this issue and identify a set of core ethical standards for neuroscience researchers. We caught up with Sohini and asked her about the discussion.
What ethical considerations are of most concern to MJFF?
The two areas that I discussed were encouraging patients to undergo genetic testing and asking them to share private, sometimes sensitive medical data, at potential personal privacy risks. There are tradeoffs when finding out about genetic history or entering medical history into an online database. Our community has by and large chosen to accept those risks and forge ahead.
With genetic testing, what are the challenges?
There is not yet a treatment specifically for those who carry a Parkinsonís-implicated genetic mutation nor is there any preventive course of action for those who discover they may be at increased risk for PD. Yet by choosing to be genotyped, they are helping to speed a cure and find better treatments for all patients not just those with relatively rare genetic forms of PD.
In your experience, what encourages patients to get involved?
Patients who engage in research understand that even if there is no direct benefit for them individually, their participation adds immense value to our scientific understanding and offers unprecedented opportunity to expand the reach and the potential to gather research data from thousands of people. With a disease like Parkinsonís, which is so variable across individuals, being able to get those large numbers is invaluable for research.
What was the experience like of discussing such an important topic with the President's advisors?
It was an honor and a privilege to advocate on behalf of Parkinsonís patients. They are at the heart of everything the Foundation does. As advances in biomedicine and related areas of science and technology continue to evolve, the findings and recommendations that come from this commission could make quite an impact on our efforts to find better treatments.
Watch Sohiniís full presentation on the Commissionís website.