Sharon Terry, President and CEO of Genetic Alliance.
Ashoka Fellow Sharon Terry looks back at 25 years of impact — that led her from being a homeschooling mom to a genetic researcher and global health leader.
Sharon, in 1994 your two children were diagnosed with a rare genetic disease. That propelled you from a homeschooling mom with a degree in theology to a self-taught genetic researcher with now multiple scientific discoveries. It sounds like a naive question but: How did you do this?
Well, when my kids were diagnosed with this rare disease, I quickly learned that no one knew anything about it. The research available wasn’t good, no doctor could really help us. The fear that something was going to happen to my children drove me — and trying to keep ahead of the disease. My husband and I realized we would have to start to do research on the disease ourselves and figure out a way forward. We had to turn to ourselves for help, there was no other way.
Where did you get the confidence to do this?
Good question. I didn’t really piece the dots together until much later, but I think one thing that ironically helped me was that I had had a very abusive childhood. I had to learn how to survive early. And from that terrible situation grew a confidence. I somehow knew, having survived my childhood years, I could overcome anything else.
You boldly asked Harvard to lend you bench space in their laboratories at night.
Yes. It worked!
And you identified a major problem in scientific research — the lack of sharing.
Yes. I quickly learned that one of the biggest impediments was that scientists don’t share, they don’t collaborate, competition is their driving force. I saw all these researchers that had collected data, but they would hoard it, and not let another researcher see it. So I had to think of ways to break through that system and build a new model — one that would encourage accelerated academic collaboration.
How did you do that?
I tracked down individuals suffering from the same condition around the world, and invited them to donate tissue, blood, health records, descriptions of their experience, to set up a database that would invite scientists to collaboratively pursue research on the disease. I knew if I could make a central repository of blood and tissue and DNA, then I could set the rules of the game to be different from what scientists were used to. And I decided my rules were going to be: “If you come to my well, you will have to share with the community and with everybody else who takes anything out of the well.”
And do you think it was key that you outcompeted them from the get-go with a central repository that was bigger than what they had?
Yes, that is certainly one way to look at it. If, for example, I had only come up with 100 data sets and they had 100, then they would have said, “Eh, well, I don’t want to play by your rules.” But they knew that we were going to be bigger than them. Because we were open, we were people-centered, and they were regional and closed. I think also people trusted us faster. I was a mom with two kids who had this disease, and was in the same boat they were in.
And your goal was not to outcompete other scientists, but to serve people with diseases.
Right. They knew that we would be in the game longer. A lot of scientists do two, three years of research on one condition, and then they go on to the next disease. In contrast, people knew I would probably work on this condition for the rest of my life.
And they were right. Though in addition, you also included many other genetic diseases into your work.
Correct, when I joined Genetic Alliance in 1996, my goal was to replicate my work and use the blueprint I had created for all sorts of other diseases. Which we did. Today, after almost 25 years, we have over 10,000 organizations that interact with us, and dozens of disease groups that are very, very active, working side by side with us, partnering on research.
A key part of your initial success was to patent the gene you discovered that caused your children’s disease, paradoxically to preserve its open accessibility.
Yes. I was concerned that others might patent the gene and restrict access. I had seen a lot on the way: researchers trying to steal my data, to thaw my samples so they’d be useless to me. When we were succeeding in sequencing the gene, I knew I had to go first. I got the patent — and then I turned the patent over to the foundation I had set up. And the foundation licensed it to researchers for a dollar back in the days when we had to license it. Now it’s free and open, so that doesn’t matter anymore.
How do you ensure privacy, and that the benefits of the research get distributed back to the community that contributed the data and samples in the first place?
Any data or samples you share — your experience of living with your disease, your electronic health record, and your genomic information — is encrypted, stored on the platform and never leaves the system. In lay terms, you keep a string on your data. You always know where it is, you know who’s looking at it. Researchers cannot export your data. Neither can they access just your data, they only get access to a big pool of aggregate data. And the fee they pay, based on their size and capacity, and anything they find out based on the research they do, gets passed back and redistributed to the pool — in terms of shares in this public benefit corporation established by LunaDNA. Those who contribute data are the shareholders in the B-corp. They receive dividends based on their shares. And, this model cannot be changed without going back the Securities and Exchange Commission with a new plan and then reconsenting everyone.
So patients and nonprofits get remunerated for gains that researchers make based on the data they contributed.
Yes, that happens, and I am very delighted.
What is different for parents or for families with genetic diseases nowadays compared to when you started?
Today, we have created an infrastructure you can plug into. We created a directory called Disease InfoSearch, which allows anyone to look up a disease as soon as they’re diagnosed, so they get all the support information, all the research information in one place. Furthermore, it’s easier to take action even when you start from a green field. Let’s say you’re a mom and a dad, your kid gets diagnosed with a genetic disease, perhaps no one else has done research on it. What we will help you with is to set up a biobank, set up a registry, set up a research consortium, and we help you decide where you want to go, how you’re going to get researchers interested.
How have you responded to COVID-19?
We set up a COVID-19 registry, built on our platform. Any organization gets a branded entry point, and the underlying backend is our registry. But your data is yours. It will not be shared unless you say it can be, and then it will not be ever shared individually, so no one will know your name, your age, etc, and it will never be exported. The communities that are building portals on the platform have a lot of questions. If I have a genetic disease that has lung implications, am I at higher risk of COVID-19? How many of my people have had COVID-19? What kind of services should a non-profit be thinking of giving? We don’t have results yet because it’s only been up a few weeks, but we’ll have some insights soon.
What is the big opportunity in the field of medical research?
I dearly hope it’s going to be that we people take control of what’s going to happen with our data and our health. My dream is an encompassing registry, a repository of everyone’s health information and genotype, where everyone has a string on their data, but it is all available for research. That we overcome the silos that keep us from sharing, and build a common infrastructure for the common good. You can see the complications of the current system in the slow COVID-19 response: As much as everyone wants to share, there’s no way to share, because the various silos have all kept their data separate from one another, and the federal government doesn’t want to go against free enterprise. And my hope is that in 10 years, this will have changed.
I like to say that in another 10 years, smart girl scouts will find the solutions to diseases. We won’t be spending one billion dollars with a 95% failure rate, fueled by the goals of big pharmaceuticals. Instead, we’ll be just having really smart people play with data and come up with solutions, because information will be freely available, it will be in abundance like air, and we will all win.
Sharon F. Terry is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for advocacy organizations and ordinary people to take charge of their health and to further biomedical research. As ‘just a Mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. She is a co-discoverer of the ABCC6 gene, and conducts clinical trials. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. Her story is the topic of her TED Talk and TED Radio Hour. She is co-inventor of the Program for Engaging Everyone Responsibly (PEER), a cross condition people-centered registry system. She was named one of FDA’s “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act” in 2013. In 2019, she won the Luminary Award from the Precision Medicine World Conference. Terry is an Ashoka Fellow since 2009. She is an avid student and facilitator of Gestalt Awareness Practice, offering workshops and individual facilitation. Her daughter and son are why she started down this path. They, their wives, and her granddaughter ground and enliven her.