Advocating for science policy: Learning how through doing / by Keegan Kelsey

As a graduate student, I have been fortunate enough to take my pick of classes here at Cornell and expand into areas that are taught by leaders within the field. These courses often provide new perspectives and insights; occasionally giving rise to new passions. One course this semester, Science Policy Bootcamp: Concept to Conclusion, has been especially motivating.

Led by Chris Schaffer (Department of Biomedical Engineering), this course has focused on how to advocate for science policy by actually advocating for science policy. Scientific topics were researched, and agendas were strategized and acted out. To sway opinions on a topic, small groups spent efforts either writing Op-Eds, bill amendments, or lobbying various levels of government.

Fresh off a year as a prestigious AAAS Congressional Fellow, Chris is more than qualified to run this course. Working under (now Senator) Congressman Edward Markey, Chris gained experience and insight into the policymaking process, and has been transferring that knowledge back to our class. On top of this, Chris was truly motivated by his experience in D.C. - and his excitement has passed on to us.

While the class is rounding out for the semester, my excitement for policy isn’t slowing.

Our small group agenda, Direct-To-Consumer (DTC) genetic testing, has taken a wild turn recently. There are multiple concerns surrounding DTC genetic tests, however an individual’s personal genetic information has the potential to inform disease prevention and reduce healthcare costs.

Initial efforts on our part were to lobby New York State government to allow access to companies like, 23andMe. New York State is unique amongst the states in that it is illegal to send any biological sample through the mail without proper state laboratory certification. This effectively blocks an average individual from access to their own genetic information. Virtually all other states have allowed access to 23andMe.

While this seems an extreme measure by a state to protect the consumer, the Food and Drug Administration recently wrote a warning letter to 23andMe notifying it is in violation of federal marketing regulations. Clearly concerns about these services extend beyond a single state.

Personalized genetic testing companies are in a period of uncertainty. Genomic data and storage is becoming pervasive, more reliable and less expensive. This data will soon be a driver of predictive efforts in health care, however the type of information is novel and people, including most health care professionals, simply do not know how to use this information.

Given my current PhD studies in genetics, I see how quickly the genomic era is coming. It is exciting and it is also concerning. The rush of data is starting and will soon explode, however consumer protections and most health care professionals are too little informed to be appropriate and effective.

I believe genetic-based health information has potential to help lives and this is worth advocating for. I also believe it may be done in a way that both protects the consumer and limits a company’s barrier of entry into market - keeping genetic information accessible and affordable.

Future blog posts will continue to highlight this theme of genetics and policy. Additionally, I will post about general science driven policy and the process of advocating for a specific agenda.