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 wasnt 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 didnt 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 theblueprint 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 childrens 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 theyd 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 its free and open, so that doesnt 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 towhen you started?
Today, we have created an infrastructure you can plug into. We created a directory calledDisease 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, its easier to take action even when you start from a green field. Lets 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 aCOVID-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 well 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 everyones 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-19response: 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 masters 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 herTED TalkandTED 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 FDAs 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 ofGestalt 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.
- For cancer treatment and more, genetic-based precision medicine holds a lot of promise - Connecticut Magazine - May 31st, 2020
- Drug factories: GMOs and gene editing are poised to transform medicine. Here's how. - Genetic Literacy Project - May 31st, 2020
- How to know your risk factors for hypertension and whether high blood pressure is genetic - Insider - INSIDER - May 31st, 2020
- Venture capital found its footing in biotech. Then came the virus. - BioPharma Dive - May 31st, 2020
- Israeli Lab: Drugs For Gaucher Disease May Work Against Coronavirus, Other Viral Infections | Health News - NoCamels - Israeli Innovation News - May 31st, 2020
- Rapid Growth on Genetic Testing Market with COVID-19 Impact Analysis, Top Key Companies like Abbott Laboratories Bio-Rad Laboratories Inc.,... - May 31st, 2020
- insideHPC Special Report: HPC and AI for the Era of Genomics - insideHPC - May 31st, 2020
- More insight into the cytokine storm caused by Covid-19 could lead to a treatment - Health24 - May 31st, 2020
- UCalgary researchers launch 360-degree study of children and COVID-19 - UCalgary News - May 31st, 2020
- 4000 Years of contact, conflict and cultural change had little genetic impact in Near East - University of Birmingham - May 31st, 2020
- Precision Medicine Market Overview By Growing Demands, Trends And Business Opportunities 2020 To 2027 - Cole of Duty - May 31st, 2020
- NOT REAL NEWS: A look at what didn't happen this week - wausaupilotandreview.com - May 31st, 2020
- Precision Medicine Informs Cost-Effective Heart Disease Treatments - HealthITAnalytics.com - May 19th, 2020
- Colonizing Mars may require humanity to tweak its DNA - Space.com - May 19th, 2020
- Complement genes add to sex-based vulnerability in lupus and schizophrenia - Newswise - May 19th, 2020
- 23andMe Is Trying to Crack the Genetic Code Behind the Coronavirus - Motley Fool - May 19th, 2020
- Global Molecular Diagnostics Industry 2019-2029: Genetic Disorders, Cardiovascular Disorders, Infections and Cancer - Yahoo Finance UK - May 19th, 2020
- Prominent Cancer Researcher to Join DRI and Renown Health - GlobeNewswire - May 19th, 2020
- Research Roundup: HIV vaccination, diabetes two-in-one injection, hybrid fish genetics - The Stanford Daily - May 19th, 2020
- Singapore researches discover specific gene linked to Asian Lung Cancer - BSA bureau - May 19th, 2020
- Grant will help scientists break new ground in gene editing - Newswise - May 19th, 2020
- Genomic Medicine Market 2020 | Know the Latest COVID19 Impact Analysis And Strategies of Key Players: Ingersoll Rand, Johnson Controls, Daikin, United... - May 19th, 2020
- Dyne Therapeutics Accelerates Programs in Facioscapulohumeral Muscular Dystrophy (FSHD) with Exclusive Licensing of Technologies to Target Genetic... - May 19th, 2020
- Coronavirus immunity passports could create a world of 'us and them'. But here's why they make sense - Genetic Literacy Project - May 19th, 2020
- New Stem Cell-Based Topical Solution Helps Bald People Regrow Hair - SciTechDaily - May 19th, 2020
- Scientists race to find a cure or vaccine for the coronavirus. Here are the top drugs in development - CNBC - May 19th, 2020
- WHITEHALL ANALYTICA THE AI SUPERSTATE: Part 2 Is COVID-19 Fast-Tracking a Eugenics-Inspired Genomics Programme in the NHS? - Byline Times - May 19th, 2020
- CRISPR And CRISPR-Associated (Cas) Genes Market Size, Share, Trends and Forecast 2026 by Major Players and Business Opportunities Caribou... - May 19th, 2020
- Researchers: Disease affecting kids could be in the genes - Newsday - May 19th, 2020
- Infection rates may have links to cancer - Medical News Today - May 9th, 2020
- Twin peeks: Stanford inherits twin registry, expanding research options - Stanford Medical Center Report - May 9th, 2020
- Management of Fertility and Hormonal Health in Women at Risk for Hereditary Gynecologic Cancers - Endocrinology Advisor - May 9th, 2020
- Individualized mosaics of microbial strains transfer from the maternal to the infant gut - Newswise - May 9th, 2020
- The Falsehoods of the 'Plandemic' Video - FactCheck.org - May 9th, 2020
- Its in your genes Whether Covid lands you in hospital or not depends on your body - ThePrint - May 9th, 2020
- FDA approves Tabrecta, first targeted therapy to treat metastatic NSCLC - The Cancer Letter - May 9th, 2020
- Research into the health of unborn babies receives government funding - UNSW Newsroom - May 9th, 2020
- Genetics and Weight: Is There an Obesity Gene? - LIVESTRONG.COM - May 9th, 2020
- New medical foundation invests in COVID-19 research funding - News - The University of Sydney - May 9th, 2020
- What Do Your Genetics Have to Do With Your Chances of Dying From Coronavirus? - Vanity Fair - May 3rd, 2020
- Scientists Find New Way to Inject Plants With Medicine, And It May Help Save Our Crops - ScienceAlert - May 3rd, 2020
- Sarepta Therapeutics Announces Research Agreement with US Department of Defense to Evaluate Multiple Constructs From its Proprietary RNA Platform as... - May 3rd, 2020
- Evanston hospitals expand to antibody testing - The Daily Northwestern - May 3rd, 2020
- Profits and Pride at Stake, the Race for a Vaccine Intensifies - The New York Times - May 3rd, 2020
- Data On Thousands Of Twins Reveals How Genetics Influences Covid-19 Symptoms - IFLScience - May 3rd, 2020
- The pieces of the puzzle of covid-19s origin are coming to light - The Economist - May 3rd, 2020
- LIST: UW awards $2.2 million to groups, scientists fighting the coronavirus in Wisconsin - WMTV - May 3rd, 2020
- World Laughter Day 2020: Why we must remember that laughter is indeed the best medicine - Hindustan Times - May 3rd, 2020
- When COVID-19 Mutates, What Are the Risks? - MedicineNet - May 3rd, 2020
- Facts that China is trying to suppress about origin of COVID-19 - WION - May 3rd, 2020
- COVID-19: What's RNA research got to do with it? - University of Rochester - May 3rd, 2020
- Medical, tech investments pay off in Covid-19 war - The Straits Times - May 3rd, 2020
- Welcome to the kingdom of the sick - Salon - May 3rd, 2020
- Safety considerations with chloroquine, hydroxychloroquine and azithromycin in the management of SARS-CoV-2 infection - CMAJ - May 3rd, 2020
- XBiotech Identifies Super Bloods for the Development of a True Human COVID-19 Therapy - GlobeNewswire - May 3rd, 2020
- On National DNA Day, scientists are trying to take the colonialism out of genetics - Massive Science - April 26th, 2020
- Turning On the 'Off Switch' in Cancer Cells - Michigan Medicine - April 26th, 2020
- Turkey's top scientific body invests TL 2.3 billion on 16 vaccine projects over 5 years | Daily Sabah - Daily Sabah - April 26th, 2020
- Covid-19 will pass. What about the racism it has illuminated? - STAT - April 26th, 2020
- Infection Rate May Indicate a Future Diagnosis of Cancer - Cancer Network - April 26th, 2020
- Misleading coronavirus information falsely attributed to Johns Hopkins - AFP Factcheck - April 26th, 2020
- He signed up for a coronavirus vaccine trial using a method that's never been used in humans. Here's why. - CNN - April 26th, 2020
- New study could lead to therapeutic interventions to treat cocaine addiction - Newswise - April 26th, 2020
- As Cuomo Issues New Executive Order, Weill Cornell Medicine Ramps Up COVID-19 Testing - Cornell University The Cornell Daily Sun - April 26th, 2020
- Another Step Towards Earlier Detection of Pancreatic Cancer - MedPage Today - April 26th, 2020
- UW president, biochemistry chair and mathematics professor named to American Academy of Arts and Sciences - UW News - April 26th, 2020
- Mustang Bio Receives Advanced Therapy Medicinal Product Classification from European Medicines Agency for MB-107 Lentiviral Gene Therapy for X-Linked... - April 26th, 2020
- Childhood Psychopathology Linked to Higher Levels of Genetic Vulnerability of Adult Depression - Clinical OMICs News - April 26th, 2020
- Gdask scientist makes crucial headway in understanding killer virus by isolating COVID-19 DNA from infected patient - The First News - April 26th, 2020
- Ethiopia's Ministry of Health Holds Webinar With Diaspora on COVID-19 Response at Tadias Magazine - Tadias Magazine - April 26th, 2020
- Immunity and our DNA: Why women are the stronger sex - The Age - April 26th, 2020
- Nobel laureate Luc Montagnier inaccurately claims that the novel coronavirus is man-made and contains genetic material from HIV - Health Feedback - April 26th, 2020
- Concert Genetics Presents Real-World Data on Utilization of NGS-Based Diagnostic Tests in NCCN 2020 Abstract - news-herald.net - April 2nd, 2020
- What scientists know about COVID-19 -- and what they don't - PBS NewsHour - April 2nd, 2020
- UVA Finds Way to Improve Cancer Outcomes by Examining Patients' Genes - University of Virginia - April 2nd, 2020
- Brown Alpert Medical School Autism Expert on Latest Advances in Research and Testing - GoLocalProv - April 2nd, 2020
- Coronavirus testing is ramping up. Here are the new tests and how they work. - Livescience.com - April 2nd, 2020
- Muscular Dystrophy Association Announces Formation of Strategic Medical Advisory Team of Experts in Neuromuscular Care and Research - PRNewswire - April 2nd, 2020
- Modalis Obtains Access to Foundational CRISPR IP - BioSpace - April 2nd, 2020
- Group behind NYC COVID-19 tent hospital is forcing medical workers to abide by anti-gay statement of faith - Metro Weekly - April 2nd, 2020