Each month we introduce you to one of our fantastic team members. Meet Nuriye Sahin-Hodoglugil, DrPH, Fetal Sequencing Program Manager, managing the Center’s various clinical research and working directly with Dr. Mary Norton and the team.
Q. Tell us about yourself.
A. I am the Fetal Sequencing Program Manager, overseeing the Center’s prenatal diagnosis clinical research and working primarily with Mary Norton, MD, and Teresa Sparks, MD, MAS. Before this, I worked at UCSF as a program manager for the Program in Prenatal and Pediatric Genomic Sequencing (P3EGS). This five-year NIH-funded study explored the clinical utility of exome sequencing in a diverse population using a multi-disciplinary approach. The clinical research I am involved in with the Center focuses on making genomic testing more widely available to pregnant individuals. We conduct research using exome and genome sequencing for prenatal diagnosis of genetic disease.
The clinical research I am involved in with the Center focuses on strategic and comprehensively considered broad access for cutting-edge diagnostic testing to pregnant individuals.
NURIYE SAHIN-HODOGLUGIL, DrPH
Our prenatal diagnosis clinical research strives to offer knowledge and early medical intervention options to help families with complicated pregnancies. As part of this effort, our team conducts interviews to incorporate the unique perspectives of our patients into our research recommendations. The multi-disciplinary approach allows us to gain insights regarding patient-oriented care in a very complex context. That’s what the clinical research is focused on; we have a few different studies happening simultaneously.
In the P3EGS study, we started with the exome. When that project began in 2017, exome testing was more feasible to study as it was more affordable. These days genome is on its way to becoming a one-stop test. There are still some important issues to resolve to make exome and genome information widely available such as data sharing, ethical and technical issues with data creation and storage, and health policy concerns, such as insurance coverage—many open questions that researchers are exploring.
Motivation
Q. Why do you love working at the Center?
A. I am part of a great team providing excellent support to patients, both in the context of research and direct clinical care. It is rewarding to be able to offer a relatively new diagnostic technology that provides benefits to patients. We don’t take the complexity of bringing novel technology to the clinical setting lightly. We always ask ourselves — What is the clinical utility? What does equitable access to these technologies look like? How can we improve it? How can patients who speak languages other than English, or with low income, or who are grappling with challenging insurance statuses, etc., gain access? Expanding the benefits of research discovery and cutting-edge technology to underrepresented or underserved populations in the United States is a top priority. This was my biggest driver, drawing me to UCSF from my previous work in global reproductive health. In my mind, I am following the same passion, though in quite different contexts and capacities, expanding access to reproductive health technologies.
I love being involved in research where you can see the impact. So, when the opportunity came to join the Center, it was a perfect fit. I see myself as a clinical research implementer, where I get a blueprint of the study and implement it, put it into real life — that’s my role. The challenge of implementation appeals to me, and our work is quite comprehensive. It’s not that we take a blood sample and conduct a test. We devise and implement multidisciplinary research. And we’re seeking to provide these genomic tests from a very wide angle—nearly all perspectives—ethical, legal, social, service provision, etc.—and expand them. At UCSF and in the Center, in particular, we have a research culture that values a comprehensive and interdisciplinary approach. So we consider many relevant perspectives—patients, ethics, policy, legal, and social—as we provide and expand access to these tests.
Everyone on our team is committed to serving all patients in the best way possible. The team goes above and beyond to reach those otherwise historically underserved. One small example is that our consent forms are translated into multiple languages for each new study, and consenting a patient could take up to two hours, say, in Arabic. But that is just how our team works. When you’re trying to enroll research participants and provide clinical care at the same time, it can become challenging. Our team brings unique skills to thoughtfully and thoroughly inform, educate and counsel patients to enroll them under the time pressures of clinical care. Like any great team, diverse backgrounds and interdisciplinary experiences contribute in sometimes surprising ways. Our Center team encourages people to use the full breadth of their experiences to be as effective as possible. We partner with UCSF Benioff Children’s Hospital Oakland and focus on reaching the broadest population with our prenatal diagnostic work. We are fortunate in that the Bay Area community is rich in diversity.
The technologies we grapple with are often very new, bringing some ambiguity. Our team embraces this with active consultation, multi-disciplinary discussion and assessments to explore and define any nuances involved. Our team uses their personal capacities to go the extra mile. My experience in global health care gives a special perspective to my Center work. This was my biggest driver, drawing me to UCSF from my previous work in global reproductive health. In my mind, I am following the same passion, though in quite different contexts and capacities, expanding access to reproductive health technologies. We are using science to improve human lives and for everyone—it may sound like a cliché, but it is true. If you want to make access to these services equitable, we’re all aware that we still have a long way to go. But we’re trying to make progress on every level.
I see myself as a clinical research implementer, where I get a blueprint of the study and implement it, put it into real life — that’s my role. The challenge of implementation appeals to me, and our work is quite comprehensive.
Nuriye Sahin-Hodoglugil, DrPH
Did You Know?
Q. What’s a surprising or interesting fact about you?
A. I used to be a mountain climber. I still like to do hikes to this day. I climbed Mount Kilimanjaro, which is the highest on the African continent. I also climbed many mountains in Turkey, my home country, including Mount Ararat. I did not find Noah’s Ark there. One fun fact about me is that I have been bringing my Turkish tea with me for the last 20 years to all the places I’ve resided.
