One scientist's journey to finding her dream job began with the announcement of the first gene-edited humans and the discovery of a role that bridged the gap between incredible scientific technology and putting it into the hands of the patients it was designed to help.
Zollie Yavarow, PhD, MA, is a scientist and ethicist who builds bridges between rare disease research and the patients it serves as Director of Scientific Engagement and Collaborations at Cure VCP Disease. Living as a digital nomad, Dr. Yavarow manages international research collaborations from wherever she lands. She earned her PhD in Pharmacology and MA in Bioethics and Science Policy from Duke University, bringing a decade of bench research experience to patient advocacy. Outside of science, she practices radical curiosity through portrait photography, adventurous eating, talking with strangers, and an openness to experiencing the world from every angle.
Transcript
I remember the exact moment I heard the news of the first gene editing in humans. I was working in the lab at Duke University where I was earning my PhD in pharmacology. In that particular moment, I had a coolerful of mouse livers that I was cutting into smaller portions to make little liver smoothies for a metabolic assay, which was just a typical day in the lab for me. Except, today, we had the news of the first in‑human gene editing.
It was 2018, and scientists from around the world, including a couple of very prominent Duke professors I often shared seminar rooms with, were attending the second international summit on human gene editing in Hong Kong, China. They were there to discuss how to responsibly use CRISPR technology in humans, which was this new tool that could edit the human genome. Like, how do we approach this carefully? What are the ethical considerations? And is this playing God?
And this Chinese scientist shows up to the conference and announces that he's already done it. He's already edited human embryos and twins have been born. I could feel myself just seething on this particular day in the lab cutting my little mouse livers. Like, a monumentous day where we had shown up to discuss the future and ethics of gene editing and all of the brightest minds have traveled from around the world to be there, and this guy is like, “Well, I already did it.” At least nine months ago, I guess.
It's like showing up to the wedding, all your friends and family travel from around the world and it's like, “Oh, we already said the vows, cut the cake, went home on our married life together.” Like, we just gathered here today to discuss how we play God with the human race and you declare it's been done.
The questions of what we do and don't do with gene editing technology rarely leave my mind. CRISPR had already changed so much in our labs. I had been working in rare disease research for several years at that point and we could suddenly do experiments so quickly, answer questions that we had never had the tools to ask before, and it was completely revolutionary. So with these rapid advancements in gene editing technology, we had greater ability than ever before to cure, not just treat, rare genetic disease.
I started asking questions like, “Well, so how do our treatments actually get from the academic lab bench to patients? What's stopping us from treating everybody, if not the scientific knowledge?” Because, at that point, I was on a path to be a principal investigator and run my own lab in rare disease and in CRISPR. I wanted my science to help people and have a positive impact on the families of rare disease patients. It seemed like science was no longer stopping us.
As I became aware of the different steps and entities that stood between the scientific technology to cure disease and actually doing it, I gained this much broader view of assistance ranging from patients actually getting a genetic diagnosis for the symptoms and disease that they were dealing with to really complex, biological, expensive manufacturing practices for gene therapies, to philosophical discussions on running clinical trials in single patients, to doctors even being trained and skilled in administering an entirely new class of medications. And as I grasped a broader picture, I started to ask my mentors how they were going to be working with these different challenges. This was a complex picture.
I remember sitting in my PI's office one day. There was a window behind him, and he was backlit. The lights were off on a cloudy day in like a boring academic building with boring gray office furniture. And my PI was a doctor, somebody who was really interested in developing these treatments and running clinical trials. So I asked him these questions about the challenges of the gap between the research and getting it into patients and what he was doing.
He said, “Oh, we don't do that.”
And I'm like, “What? Like, what do you mean you don't do that? We do all this work to understand diseases, to develop treatments, to help patients. And the step that's actually putting it into their hands that actually helps patients, you don't do that?”
I don't think he was dismissive about it or ignoring it. I think he just didn't think about it. I think it was just beyond his job description, beyond the scope of what an academic scientist does.
And I remember thinking, “Gosh, somebody really ought to be doing that. All this science and where are the people paying attention to how it actually gets into the hands and the homes of the patients that it's supposed to benefit?” I thought, “Maybe that person could be me.”
But what even was that job? When I started my PhD, I had planned to become a PI principal investigator myself and run my own lab. The only PhD‑appropriate jobs that I knew to exist were to go and be a PI, be an industry scientist, and, if you were an oddball, maybe you'd go be a journal editor or you'd go into startups. These were all of the jobs that I was told about for a PhD in the sciences.
So I graduated with my PhD in pharmacology with all of these questions about ethics and rare disease swirling my brain. I had added in a master's in bioethics and science policy with a specific focus on rare disease and human gene editing. I wanted some other job that I didn't have a name for.
So what does any job this recent grad do but move in with their mother? What you do? And do a lot of informational interviews trying to figure out where I fit and what this job was even called. I felt like I was just hitting dead end after dead end, people not seeing where I fit within their company, within the industry even in less traditional roles. I just felt so lost. I was really worried and starting to panic that I had maybe over‑specialized, and just wasn't going to find the place for me.
But I kept looking because I had this clear vision of what I wanted, even if I didn't know what it was called. I knew I wanted to be this point person, the central liaison between all the scientists and contract research organizations and patients and pharmaceutical companies and regulatory agencies and funders, all of the people that go into getting a treatment from the academic bench into patients' hands. I wanted to be the person. making sure that that science actually reached patients, that somebody was paying attention to the gap that my professors didn't think about.
It may have taken hundreds of Zoom calls and hundreds of unanswered job applications and attending and crashing a handful of rare disease conferences, but I did eventually find that this job existed in the rare disease community at nonprofit organizations. And that this job has a title like “Director of Scientific Engagement and Collaborations,” and that there were people looking for me just as much as I was looking for them.
I'm over a year now into the role that I call my dream job, Director of Scientific Engagement and Collaborations. These days, I spend some of my time fielding questions about CRISPR, reminding people of its limitations and what it cannot or should not do. I think about the Chinese scientist who edited humans without global consensus, how he went to jail and lost his medical license, and how humans don't like it when other humans try to play God like that. I also think about my PI in that gray office backlit by a cloudy window telling me, “We don't do that,” because somebody really ought to do it. Somebody ought to bridge the gap between all of the brilliant science happening in labs and the patients who are waiting for treatments. It turns out that someone is me.
Thank you.