On November 11, Rami Major joined the Center for Bioethics as a Postdoctoral Fellow.
Rami has a background ranging from the tiniest creatures to the biggest ethical questions. We’re excited to have her join us and we look forward to working with her.
Get to know Rami in this Q&A.
Tell us about your role in the center. What’s your position and focus?
I’m a postdoctoral research associate in the Department of Social Medicine, working jointly with the Center for Bioethics, ELSI@UNC and the Program for Precision Medicine in Healthcare.
While I’m still figuring out exactly what projects I’ll be working on, I’m hoping to build on previous work related to human gene editing ethics and explore other bioethics questions related to neuroscience and genetic testing.
I’m also looking forward to delving more into the clinical ethics space, where I hope to learn about how ethical considerations and healthcare policies factor into patient care and clinical trial administration.
What was your path to the center?
I came to graduate school with an interest in science and its intersection with areas like ethics and policy.
I got my Ph.D. in genetics and molecular biology, working on a gene editing optimization approach to treat a rare neurodevelopmental genetic disease called Angelman Syndrome.
As I was working on this gene editing project, I was really invested in the implications of what my research would mean further down the line.
I connected with Eric Juengst, who used to be the director of the Center for Bioethics, to see if he would be willing to serve on my committee and advise me on a bioethics aim for my dissertation.
I was especially interested in incorporating bioethics into my dissertation work because for Angelman syndrome and other neurodevelopmental disorders, we have a lot of evidence to suggest that the most successful treatment would be a prenatal one. And there are lots of ethical questions associated with gene editing prenatally, because then you’ve got two patients to consider. You’ve got the pregnant person and you’ve got the fetus.
Through meeting Eric, I got connected with a lot of other members of the Center for Bioethics on a project looking into gene editing governance.
I worked with a team within the Center for Bioethics for a little over three years.
Because everyone had this different background of non-technical science, I could step in and explain the nuances of what gene editing is and how different gene editing technologies work.
I helped interview scientists and policy professionals from around the globe for this project. This was my first experience with qualitative research and I loved being able to ask questions that scientists don’t often get to consider in their day-to-day lives.
I thought it would be really interesting as a next career step to learn more about the bioethics landscape full-time while bringing my scientific background to new questions.
What are your goals while you’re with the center?
I have so many!
As we’ve talked about, I have some background in bioethics but primarily related to research ethics.
In this position, I’m hoping to expand my knowledge of bioethics to broader questions outside of my technical expertise.
I’m also hoping to learn more about how ethics can influence policy, especially in the clinical and healthcare ethics space.
One of my long-term goals is to contribute to regulation of emerging technologies in the healthcare space, and being able to consider the ethical implications of these is extremely important. I’ve had limited exposure to science and ethics in a more clinical setting, so I’m looking forward to growing more in that area.
What are some challenges you anticipate facing in this new position?
I think one of the challenges that I’m anticipating is balancing my technical, scientific background with bioethics. I’ve been trained to be over-analytical of things in order to come to clear conclusions.
Unlike scientific experiments, there’s a lot more gray area in the bioethics space, and a lot more debate on how to answer bioethics questions.
I know that there are terms I won’t be as familiar with, and some vernacular and historical background that I’ll have to catch up on, but I view these things as an opportunity and am excited to expand my horizons.
From working on a bioethics project for the past few years, I’ve realized that another one of the things that is tough with ethics research is taking findings and translating them into action.
I’m interested to see how we can use some of these major takeaways to inform recommendations or craft solutions, especially on the policy scale. That’s the area that I’m mainly interested in, because I think ethics plays a really important role in informing policy, or at least it should.
What’s a fun fact about you?
I feel like everyone – or at least many people – as a little kid had that dream of being a marine biologist, and I never grew out of it.
I did marine biology research for four years on shrimp monogamy. The mating system of a shrimp can have impacts on a number of things—our understanding of climate change on a species, preventing extinction and even maintaining aquaculture sustainably.
Parts of the research were fun—it involved lots of hours of looking at a tiny shrimp the size of your fingernail under a microscope, but it also helped me realize that I was more interested in research that had a more direct human impact. That’s what pushed me toward this translational research path of looking into cancer and rare diseases, and eventually landed me in graduate school to study genetics.
I think this sort of illustrates my path toward policy—I kept wanting to be closer to the areas that would have an impact on human life.
One discovery here can impact another discovery there, which might be what ultimately impacts our ability to develop a treatment for people. And then people need to access that treatment, so that’s where policy and advocacy come in.
So even the littlest things (like a shrimp mating system!) can make a large-scale difference, and now I’m figuring out where I’d like to work along that pipeline of impact.