In Person: Studying the Implications of New Medical Technologies

Wendell Fortson

I’ve been here before, observing the gentle head tilt and the well-meaning, perplexed gaze. Next, I know, comes the question: “What is a biomedical scientist doing in law school?” This time the question comes from my new postdoc adviser. Nonplussed, I prepare to launch into my standard explanation: short, vague, and well rehearsed. But before I launch, she continues: “... because I considered doing the same.” I sit back, relieved and encouraged. She seems an excellent match, but I had not ventured to hope that she would appreciate the career path I had chosen.

To move research from the bench to the clinic requires an understanding of science-related law, ethics, and policy.

Even before I started my Ph.D. program, I knew I wanted to attend law school. Graduate school was a natural next step after an undergraduate degree with research training in cancer biology. But it wasn't so obvious how law school would fit into a science-focused career -- or, indeed, what kind of science-focused career I was moving toward. Still, always in the back of my mind was a notion, vague but strong: As science grows increasingly complex and controversial, there will be a need for people who can bridge the gaps between science and the people science affects. To move research from the bench to the clinic requires an understanding of science-related law, ethics, and policy. Maybe that would be my role.

After finishing my dissertation, with a year of part-time law school behind me, I searched for postdoc opportunities with the challenging, investigatory character of bench work provided but without the bench. I believe in following -- or blazing -- trails in whatever direction appears to be forward until you discover your true direction. I did this for 5 years of grad school and more than a year of law school -- I'm now into year two -- without knowing where I was going. But in the end, I found my true passion in a field I didn't know existed: the ethical, legal, and social implications (ELSI) of genomic research.

Interested in ELSI research?

Then you really ought to join the ELSI group on CTSciNet, the Clinical and Translational Scientist Network. Not a CTSciNet member? It takes just a few minutes to join, and it's free.

In 2003, in "A vision for the future of genomics research," Francis Collins -- who was then the director of the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health -- and his co-authors encouraged collaboration between basic scientists and clinical scientists, and between life scientists and social scientists, to address the ethical, legal, and social implications of genomic and genetic research and the resulting new technologies. Later that fall, NHGRI launched a new program, the Centers of Excellence in ELSI Research (CEER[1]) to conduct ELSI research and to train biomedical and other postdocs to become independent ELSI investigators. Since then, CEER has funded six full CEER programs -- including one at the University of North Carolina (UNC), Chapel Hill -- and two exploratory programs. I stumbled onto the ELSI postdoctoral fellowship while browsing the UNC Chapel Hill job listings during a break from my evening law classes.

ELSI researchers come from a variety of disciplinary backgrounds. They do social science, health, philosophical, policy, or legal research on topics such as privacy, confidentiality, the psychological impact of genetic information, informed-consent issues in genomics research, commercialization of genetic products, genetically modified foods, behavioral genetics, gene testing, and gene therapy. Many of these issues are discussed on the Human Genome Project's ELSI Web site.

Too few biomedical scientists are entering the ELSI field. Most of the biomedical scientists I have interacted with are unaware that ELSI exists and oblivious to the ELSI issues their research raises. They're also reluctant to collaborate with ELSI investigators -- partly, perhaps, because of this lack of awareness. But ELSI questions must be addressed if their scientific work is to fulfill its practical promise.

Another reason biomedical scientists may be reluctant to work with social science, bioethical, or legal researchers to explore ELSI issues is the perception that these researchers lack an understanding of “the science” -- and indeed it is difficult for a nonscientist to understand complex genetic mechanisms such as DNA replication, repair and recombination, transcription, translation, and gene expression. That's why scientists must engage ELSI questions; otherwise, nonscientists may establish policies that impede the progress of medical research and development. That is why centers like the CEERs are so important -- and why it's so important for people with scientific backgrounds to get involved in ELSI research.

As a postdoctoral fellow at the Center for Genomics and Society (CGS) at UNC Chapel Hill, I am learning about a range of rapidly evolving ELSI issues and how to approach them from an interdisciplinary perspective. The work requires me to employ the knowledge I gained during my scientific training. My postdoc fellowship allows me to attend law school part time in the evenings; I'm even using my fresh legal knowledge in my ELSI research. I cherish the ability to work remotely, away from the lab, at unconventional hours; no more blankets in the corner of the lab waiting for my experiment to come down. And the leadership at CGS encourages postdocs to pursue independent funding and develop new and innovative projects that address ELSI issues related to genomics. I have established excellent relationships with investigators at UNC Chapel Hill and members of other CEERs.

Until quite recently, I did not see ELSI as a part of my career path. But, after a bit of wandering, I have discovered a novel, rewarding, and important career path. As science, medical technology, and the ELSI field grows and changes, I intend to grow and change with it, helping to push the field forward.

In Person guidelines

Hidde de Vries

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1. University of Washington Center for Genomic and Health Care Equality; Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics; the Duke Center for the Study of Public Genomics; Case Western Reserve University Center for Genetic Research Ethics and Law; Center for Genomics and Society at the University of North Carolina at Chapel Hill; University of Pennsylvania Center for the Integration of Genetics Healthcare Technology

Wendell Fortson is a postdoc at the Center for Genomics and Society at UNC Chapel Hill

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