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Priorities continue to shift for science at the federal level – including funding cuts, controversial appointments, and changes in leadership. As the new program director of DukeEngage in Washington program, I am excited to engage undergraduate students at the intersection of science and public policy
On March 22, 40,000 people participated in the March for Science in Washington DC, and thousands more participated in sister marches throughout the world, including in Antarctica and at the bottom of the Pacific Ocean.
The next four years present an unprecedented learning opportunity for students, both in understanding the political influence on science and policy, and assessing the strength of the institutions to support scientific research and endeavor. In addition, we are likely to see changes in the strategy of organizations that utilize science to buttress their policy aimss.
At Science & Society, I am in the midst of taking over the enormity of the work of DukeEngage in Washington’s previous project director, Bob Cook-Deegan, now affiliated with Arizona State University.
The previous iteration of the program focused primarily on genome policy; this summer’s program will span conservation, energy, health, and social policy. Through diverse internship programs, our students will be able to better understand how science plays a role in policy making – whether in the federal government, industry, or local and state government.
Students will explore where science fits in the policy process; how policy makers find out about the science related to important issues; whether scientific innovation is ignored or undiscovered; how institutions changing their strategies to work with the new structure in Washington; and what informs the choices of our policy makers.
I am fascinated with the influence of science on policy and vice versa. I hope to bring that passion to DukeEngage students this summer. Engaging these students in the science policy discourse in the nation’s capital will push them to think broadly; to question the ethics and decision-making in science and policy; and will inform their learning experiences and those of their classmates when they return to Duke in the fall.
Thomas Williams is a faculty member of the Duke Initiative for Science & Society’s Masters in Bioethics and Science Policy and a Senior Lecturing Fellow at Duke Law School.
Two Duke graduate students, three undergraduates and two groups of undergrads will pursue faculty-mentored research projects this summer and next year with grant funding from Bass Connections.
In this interview, Rosa Castro, PhD and recent graduate from the Duke Master of Arts in Bioethics & Science Policy program, discusses her transition from patent law to ethics and policy in the field of biotechnology. Rosa is currently the managing editor for the Journal of Law & the Biosciences, and has most recently been hired as a postdoctoral associate at Duke University.
Sara Katsanis, a bioethicist at Duke University, studies the complications that arise when DNA databases are used to combat crime, especially human trafficking. If a child is kidnapped and illegally placed into adoption, for example, DNA is a reliable constant for identification. From this work, she is familiar with the ethical questions that come up when a victim is asked to give up their DNA to a database.
It’s late in the morning and the usual empty lobby in the Levine Science Research Center is filling with undergraduates and various faculty researchers from around Duke’s campus. Students unfold easels and erect temporary walls of felt and foam to support dozens of posters displaying research from a variety of fields.
It’s the culmination of the Duke University Summer Research Program and hundreds of hours of lab work by students in the Huang Fellows Program and the Duke Undergraduate Research Society. They are coming together to showcase their findings and practice presenting their science to peers and the public.
For many undergrads, this is their first poster and their first poster session. It’s an important milestone in their education and future career in STEM and medicine.
Jordan Richardson works in the Mikati lab at Duke and is part of the 2016 class of Huang Fellows. She’s exploring a condition called alternating hemiplegia of childhood, or AHC – a rare neurological disorder that causes temporarily paralysis in various parts of the body, including the face.
During her early research the team realized one of the drugs they were experimenting with – a main ingredient in Dayquil – had a startlingly small amount of research regarding its toxicity.
“Most of the people who have AHC are children and so there’s not a lot of research on this drug in the developing brain,” explains Jordan.
Seeing a gap in the data, Jordan realized she had found the topic for her summer research project. Now, months later she hangs her poster alongside those of her student colleagues – The Acute and Long Term Toxicity of Dextromethorphan in the Developing Brain.
While seemingly random, Jordan’s research actually strikes close to home.
She grew up with a close friend named Anna who suffered from an intellectual disability and severe epilepsy. This relationship profoundly influenced Jordan’s life and continues to make an impact on the Jordan as she prepares for medical school.
In her younger years, Anna’s pediatric neurologist was amazing. But when she transitioned to the adult system, her treatments took a turn for the worst.
Her new doctor, unfamiliar with how to interact with someone suffering from such a severe cognitive impairment, applied a nerve stimulator to control Anna’s seizures. Not seeing the results he wanted, the doctor continued to increase the strength of the stimulator over the course of several weeks.
In the meantime, Anna, who functioned at a 3-year old level, lost her appetite and eventually stopped eating altogether. She lost a dangerous amount of weight and was about to be hospitalized until they realized what was going on.
“It was literally pulsing right here,” says Jordan as she forms her hand into a claw near her throat where the stimulator was inserted and mimics the beating of a heart.
Unlike a normal patient, Anna couldn’t explain how she was feeling and why she couldn’t eat. And unfortunately, the doctor in charge of her care was not properly trained to address the circumstances.
“Like 56% of med school deans say their graduates aren’t prepared to work with people with intellectual developmental disabilities,” quotes Jordan.
At Duke, this experience is spurring her on to educate pre-med students on how to better serve the disabled population and to advocate for disability rights in the medical field.
“It really opened my eyes on a personal level to the problems that exist for people with intellectual developmental disabilities and healthcare.”
Realizing that most people have no training or experience on how to treat patients with disabilities, Jordan set out to incorporate this into her own studies and to spearhead the Special Olympics Health Alliance.
The Special Olympics Health Alliance unites pre-med students in the Triangle and special Olympic athletes in the Durham community to talk about nutrition and health, while helping students gain a better understanding of how to treat future patients like Anna.
Jordan believes participating in programs like this are necessary in order to have an effect at the public health level – a lesson she credits to her experience in the Huang Fellows Program. The fellowship trains students to understand science in the context of and in service to society.
For Jordan, that means expanding her effort beyond just becoming a doctor or scientists. She now incorporates policy, advocacy, and non-profit work into her education.
She encourages other pre-med students and budding researchers to find the issues they truly care about and incorporate these interdisciplinary elements into their own education, rather focusing solely on the lab or the degree.
Almost a year after hanging her poster in that lobby, Jordan has been invited to present her findings at the American Academy of Neurology. The annual international conference draws hundreds of neurology experts from around the world.
She looks forward to presenting her work and rubbing shoulders with some of the foremost leaders in her field. There will be sessions focused on epilepsy in the clinic and new findings in Down syndrome research. She hopes to connect with other researchers and explore opportunities to do clinical and advocacy work during a future gap-year.
While these opportunities are welcome and the research into AHC exciting, she eventually comes back to her experience with Anna as the inspiration for her work.
“As a doctor, you are right on the cusp of someone’s humanity,” she says. “You’re right at the intersection of what makes them a person in the functional sense – what makes them alive, what makes them operate, what makes them be able to function in the world. But also what makes them a person.”