For immediate release
New Awards Celebrate Unorthodox Open-Source Approaches to Accelerating Human Health Advances
Among the winners: A personal quest by a husband-and-wife team to cure an inherited lethal genetic disease; and an online health study of sexual and gender minority adults in the U.S.
Download links for winners’ photos and social media materials included below.
BOSTON (April 13, 2016) - An “open-source” approach to accelerating human health advances is the common theme among a diverse group of medical science projects that have won six science awards honoring “excellence in participant-centered research” - a rapidly emerging field that aims to turn patients and healthy people into more active and more data-sharing participants in medical research.
The awards will be given out at Harvard Medical School in Boston on April 25 at a scientific convening called GET Conference (“GET” stands for “Genomes, Environments, Traits”). “The winners of the GETy Awards are at the forefront of a research revolution that will radically accelerate the rate of human health advances,” says Jason Bobe, organizer of the GET Conference, and Executive Director of the nonprofit PersonalGenomes.org. “Active participation in organized health research is largely a fringe activity today, far too few people are engaged. Precision medicine and wellness will only be achieved if we can make participation in research more mainstream.These winning projects show the ways forward.”
Participants at the annual GET Conference debate the technical, commercial, and societal impacts of advances in the ability to measure and understand people and their traits through expanded participatory research.
The six winning projects are:
1. A scientist’s personal effort, together with her husband, to cure a lethal genetic mutation she inherited from her mother (Sonia Vallabh and Eric Minikel, Broad Institute, Participant Pioneer Award)
2. An online publication that takes a hard-nosed investigative approach to covering the revolution in biomedical research, healthcare policy and politics, and human health (Statnews.com, Communications Award)
3. An online health study of lesbian, gay, bisexual, transgender, queer (LGBTQ) and other sexual and gender minority adults in the United States, aiming to improve health disparities and the well-being of diverse communities (The PRIDE - Population Research in Identity and Disparities for Equality - Study, Mitchell R. Lunn, MD, Juno Obedin-Maliver, MD, MPH, Diversity Award).
4. A toolkit offering scientists a visual approach to assisting the “informedness” part of informed consent for clinical studies (Participant-Centered Consent Toolkit, John Wilbanks, Sage Bionetworks, Governance Award).
5. An open source software framework designed by Apple, turning iPhones into tools for medical research by helping doctors, scientists and other researchers gather data more frequently and more accurately from participants anywhere in the world (Researchkit, Dr. Yvonne Chan, Icahn School of Medicine at Mount Sinai, Toolmaker Award)
6. A study aiming to engage tens of thousands of individuals in genetic research through the Genes for Good Facebook App (Genes for Good, Scott Vrieze, Institute for Behavioral Genetics, University of Colorado Boulder, Sharing Award).
The GET Conference is open to scientists, science enthusiasts, “quantified self nerds”, people who are affected directly or indirectly by health challenges, and anyone who recognizes the importance of participating in research. Attendees can learn about the best participatory health research studies available today and they can advance human health through direct participation in up to 18 different studies examining everything from the microbes in our guts to toxic chemicals in our urine.
Conference attendees will select their favorite study by awarding the People’s Choice GETy Award at the conference on April 25. The award is sponsored by the John S. and James L. Knight Foundation.
The Participatory Research movement hopes to accelerate scientific discoveries by making far more data available. The premise is that more individuals will join scientific studies if they are empowered with the choice to access and share their data. And the greater availability of shared data will allow scientists to conduct more studies, and produce more robust and meaningful results.
Researchers increasingly face problems in recruiting individuals to participate in studies. Participation rates in the US have been dropping, according to a 2011 report by researchers at Wayne State University School of Medicine.
For more information about the April 25/26 GET Conference in Boston please visit http://www.getconference.org/. To interview GETy Award winners or speak with a representative of the GET Conference please contact Marc Fest via email@example.com or 305-604-9500.
Participant Pioneer Award
"A personal quest to cure prion disease"
Sonia Vallabh learned in 2011 that she inherited a lethal genetic mutation from her mother. Her husband Eric Minikel and she had no background in biology but they set out together to re-train as scientists and work on developing a treatment for her disease. They are currently PhD students in Stuart Schreiber's laboratory at the Broad Institute, where they work side-by-side on developing small molecule therapeutics for prion disease.
In 2010, Sonia Vallabh watched her 52-year-old mother die of a rapid, mysterious, undiagnosed neurodegenerative disease. One year later, Sonia learned that her mother's disease had been a genetic prion disease, and that she herself had inherited the causal mutation (D178N-cis129M) in the prion protein gene (PRNP), making it very likely she would suffer the same fate in 20 years' time. There was no prevention, treatment, or cure available. At the time, Sonia was a recent Harvard Law School graduate. Her husband Eric Minikel was an MIT-trained city planner and engineer, Despite having no biology training, the couple set out to retrain themselves as scientists and devote their lives to searching for a treatment or cure for Sonia’s disease. They began taking night classes and attending conferences, left their careers for new jobs in research labs, and eventually enrolled as PhD students in biology at Harvard Medical School. They are now based in Stuart Schreiber's laboratory at the Broad Institute of MIT and Harvard, where they have launched a new therapeutic initiative to discover drugs for her disease.
Sonia’s husband Eric Minikel originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, he got some bad news. His wife and the love of his life, Sonia Vallabh, tested positive for a mutation (PRNP D178N cis-129M) that causes genetic prion disease, and that had claimed her mother's life one year earlier. Sonia was 27 at the time. The mean age of disease onset for her mutation is ~50, and the mutation is highly penetrant, meaning she is exceptionally likely to develop the disease unless a treatment or cure is found. Sonia and Eric set out on a quest to re-train themselves as scientists. They both started taking night classes, reading papers, calling up scientists, going to conferences. They left their old careers and found jobs in research labs, and eventually enrolled at Harvard Medical School, where they are now PhD students in biological and biomedical sciences. They have found their scientific home at the Broad Institute, where they work side by side in Stuart Schreiber's lab. They now realize what once seemed an impossible dream: to wake up each day and work, together, on trying to cure Sonia's disease.Photo of Sonia Vallabh: http://mf.ly/vp5
Photo of Eric Minikel: http://mf.ly/ok0
STAT is a digital publication covering the life sciences, including basic biomedical research, health, healthcare policy and politics, the pharmaceutical and biotech industries. STAT aims to deliver fast, deep and tough-minded journalism, taking readers inside science labs and hospitals, biotech boardrooms and political backrooms. STAT dissects crucial discoveries. It examines controversies and punctures hype.
John W. Henry is the owner of the Boston Globe (as well as the Boston Red Sox and Liverpool Football Club) and the investment firm John W. Henry & Company. He launched STAT in 2015 because he felt that important stories in the life sciences were not being covered, or covered well, by the press.
Photo of John W. Henry: http://mf.ly/nki
Participant-Centered Consent (PCC) toolkit
Sage Bionetworks developed and maintains the Participant-Centered Consent (PCC) toolkit. The toolkit is built for people who are designing clinical studies and who wish to make their informed consent user-centered, rather than document-centered. It contains the building blocks of a visual, interactive approach to informed consent, and it helps create visual summaries of consent forms, mapped to key underlying text, for use in software or print. Using a mixture of icons and text labels can convey the essential concepts of a study in a more intuitive manner and help both sides of the consent conversation move closer to the goal of informed choices. More than 27 clinical studies have implemented visual consent in mobile studies.
John Wilbanks is the Chief Commons Officer at Sage Bionetworks. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at Harvard’s Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was executive director of the Science Commons project at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.
Photo of John Wilbanks: http://mf.ly/9xq
The PRIDE (Population Research in Identity and Disparities for Equality) Study
The PRIDE (Population Research in Identities and Disparities for Equality) Study is a longitudinal, online, health study of lesbian, gay, bisexual, transgender, queer (LGBTQ) and other sexual and gender minority (SGM) adults in the United States. Based at the University of California, San Francisco (UCSF), The PRIDE Study aims to improve health disparities and the well-being of these diverse communities through better understanding of factors that positively and negatively influence physical and mental health. Over 45 LGBTQ-focused community-based organizations, community centers, health clinics, and national professional organizations are partnering with The PRIDE Study to form a participant-powered network committed to improving LGBTQ health through research called PRIDEnet. These organizations and their constituents are collaboratively developing The PRIDE Study’s research questions and community engagement plans. Using advanced and emerging technologies to improve participation and simplify data collection, personalized interactive user experiences facilitate easy engagement and promote participant retention for years.
Mitchell R. Lunn, MD is an Assistant Professor in Division of Nephrology of the Department of Medicine at the University of California, San Francisco (UCSF) and Principal Investigator of PRIDEnet, a participant-powered research network devoted to sexual and gender minority (SGM) health. Mitch is a long-standing advocate for SGM inclusion in research and higher education who lectures around the country on SGM medical education, SGM health, and SGM community engagement. He co-directs The PRIDE Study – an online, national, longitudinal cohort study of sexual and gender minorities that aims to better understand how being SGM influences physical, mental, and social health. The PRIDE Study and PRIDEnet teams work collaboratively to foster community engagement using traditional and electronic methods (including an Apple ResearchKit-powered iPhone app) in communities that are underserved, understudied, and vulnerable to poor health. Mitch earned his Bachelor of Science degree with highest thesis honors from Tufts University and his Doctor of Medicine degree from Stanford University School of Medicine before internal medicine residency at Brigham and Women’s Hospital and nephrology fellowship at UCSF.
Juno Obedin-Maliver, MD, MPH is a Clinical Instructor of Medicine at the University of California, San Francisco (UCSF) and a Clinical Research Fellow in Advanced Women’s Health at the San Francisco Veterans Affairs Medical Center. With more than 15 years in SGM health, she is a recognized opinion-leader and researcher in the field. She has extensive experience in community engagement practices that facilitate methodologically-sound clinical research for hard-to-reach populations. She is a practicing clinician with a dedicated interest in SGM health and long-standing commitment to supporting diversity in clinical practice, education, and research. Specific areas of experience are electronic survey administration and community-engaged participatory research. Together with Dr. Lunn, she is a co-director of The PRIDE Study and a founding member of the Stanford Lesbian, Gay, Bisexual, and Transgender Medical Education Research Group. She completed her undergraduate training at Hampshire College, medical school at Stanford University School of Medicine, public health training at the University of California, Berkeley, and obstetrics and gynecology residency at UCSF.
Video about the PRIDE study: www.youtube.com/watch?v=ierbGIDFH_8
Photo of Mitchell R. Lunn: http://mf.ly/5ab
Photo of Juno Obedin-Maliver: http://mf.ly/773
ResearchKit, an open source software framework designed by Apple, turns iPhone into a powerful tool for medical research by helping doctors, scientists and other researchers gather data more frequently and more accurately from participants anywhere in the world.
Dr. Yvonne Chan is a board-certified Emergency Medicine physician with a PhD in clinical research as well as experience in mobile health applications, personalized medicine, pharmacogenomics, genomics, clinical trials and patient education. Dr. Chan is the Director of Personalized Medicine (PM) and Digital Health (DH) at the Icahn Institute for Genomics and Multiscale Biology at Mount Sinai. Her role is to lead the Institute in study design, execution, and management of all DH and PM related initiatives conducted at the Icahn Institute. She is principal investigator of the Asthma Mobile Health Study, which was the first study to use ResearchKit to advance asthma research.Photo of Dr. Yvonne Chan: http://mf.ly/neq
Genes for Good
Genes for Good is a research study conducted at the University of Michigan. The major goal of the study is to engage tens of thousands of individuals in genetic research. The primary tool to accomplish this is the Genes for Good Facebook App. Participants engage in the study through the App, answer health-related questions, and view summaries of selected survey questions. Researchers are making progress in understanding how genes impact our lives. Many individual genes have been discovered that affect risk of diabetes, heart attack, cancer, etc. But genes don't do it alone. Our genetic makeup interacts with our environment to lead to disease. PKU is a great example of how genes interact with the environment to result in disease. With PKU, you have to have a genetic mutation, and you have to ingest phenylalanine (which naturally exists in much of the food we eat) to develop the disease. Many other diseases are no different. Genes and environments that can lead to disease are numerous, varied, and much harder to measure. Genes for Good is a valuable step toward understanding this complex interplay that affects the health of billions of individuals, almost certainly including you, your friends, and your family.
Scott Vrieze is Assistant Professor of Psychology & Neuroscience, and Faculty Fellow at the Institute for Behavioral Genetics, University of Colorado Boulder. His research investigates the nature and origins of mental illness and health behavior.
Photo of Dr. Scott Vrieze: http://mf.ly/zip
About the GET Conference
For the past six years, the GET Conference has explored the frontiers of understanding about human biology. It serves as an annual forum to debate the technical, commercial, and societal impacts of advances in our ability to measure and understand people and their traits.
The GET Conference is produced by PersonalGenomes.org, a 501(c)(3) charitable organization based in the United States whose mission is to make a wide spectrum of human biological information accessible and actionable to increase biological literacy and improve human health. We support groundbreaking initiatives including the Global Network of Personal Genome Projects, Open Humans and the GET Conference.
Social media materials:
Feel free to use the language and images below to inform your audiences via social media.
Meet the winners of our GETy Awards. A common theme among the winners is the power of unorthodox open source approaches to accelerating human health advances. Among the winners: A personal quest by a husband-and-wife team to cure an inherited lethal genetic disease; and an online health study of sexual and gender minority adults in the U.S. The winners will receive their awards at Harvard Medical School at the GET Conference on April 25. But you can already learn all about them now here: http://www.getconference.org/get2016/gety-awards-release.html
Above image for Facebook post downloadable at http://mf.ly/lm4
Six new GETy awards celebrate unorthodox #opensource approaches to accelerating #humanhealth advances: http://bit.ly/22plhjU
Six new GETy awards celebrate participant-centered #opensource approaches to accelerating #humanhealth advances: http://bit.ly/22plhjU
Photo of trophy:
Download a photo of the Award Trophy here: http://mf.ly/kec