Speakers

Carolyn Abraham is an award-winning science journalist in Canada, and author of Possessing Genius: The Bizarre Odyssey of Einstein’s Brain, published in seven countries. The long-time senior medical writer for the Globe and Mail, she is the four-time winner of the Canadian Science Writers’ Association’s annual award for her reporting and winner of two National Newspaper Awards. She wrote the chapter on the SARS outbreak in Canada the request of the World Health Organization, co-wrote the National Film Board production entitled DNA and Dollars and appeared in the National Geographic documentary on Einstein’s brain that was broadcast in fourteen countries. In her latest book, The Juggler’s Children: A Journey into Family, Legend, and the Genes that Bind Us, Carolyn tells the personal story of using genetic tests to solve two family mysteries. It is published in Canada this spring. She lives with her family in Toronto.
Misha Angrist was the fourth participant in the Personal Genome Project (PGP). He has chronicled the development of the project and his own participation in it in his book, Here is a Human Being: At the Dawn of Personal Genomics (HarperCollins, 2010). A geneticist by training, he believes that the benefits of genomic technology will never be realized without the active involvement of the public. He is an Assistant Professor in the Duke University Institute for Genome Sciences & Policy.
Madeleine Ball, PhD is Research Director for the Personal Genome Project. She has been involved in developing the computational and literature review methods used to interpret PGP genomes and is a leading developer of GET-Evidence, the PGP’s system for genome interpretation. She is also an advocate for using Wikipedia as a knowledge sharing resource. Her contributions include the Genetics page and other core genetics material, as well as helping develop an offline version of Wikipedia now used by hundreds of thousands of children.
Dorit S. Berlin, Ph.D., is principal investigator of the NIGMS Human Genetic Cell Repository, a large biobank funded by the National Institute of General Medical Sciences that focuses on heritable disorders and houses more than 11,000 cell line and nucleic acid samples at the Coriell Institute for Medical Research. Dorit is also principal investigator of the Congenital Heart Disease Genetic Network Study Biorepository, which is funded through the National Heart, Lung, and Blood Institute. Prior to joining Coriell, Dorit was a postdoctoral scholar at Stanford University, where she worked on scientific curation for the Pharmacogenomics Knowledge Base. Dorit also founded and led an education project to create a web-based pharmacogenomics teaching module and implement it as an online exhibit for the Tech Museum of Innovation in San Jose, CA. Dorit earned her undergraduate degree in chemistry from the Massachusetts Institute of Technology and her doctorate in molecular and cell biology from the University of California, Berkeley.
Jason Bobe is the Executive Director of PersonalGenomes.org, a 501(c)(3) nonprofit whose mission is to make a wide spectrum of human biological information accessible and actionable to increase biological literacy and improve human health. We produce the GET Conference and support the Personal Genome Project. Follow @jasonbobe on Twitter. (Photo credit: Lindsey Light)
Sandra de Castro Buffington is director of Hollywood, Health & Society, a program of the USC Annenberg Norman Lear Center that leverages the power of the entertainment industry to improve the health and well-being of people worldwide. Sandra provides resources to leading scriptwriters and producers with the goal of improving the accuracy of health-related storylines on top television programs and films, resulting in more than 565 aired storylines over the span of three years. Funded by the Centers for Disease Control and Prevention, The California Endowment, the Bill & Melinda Gates Foundation and the Skoll Foundation, among others, the program recognizes the profound impact that entertainment media have on individual knowledge and behavior. For her work, Sandra was named one of the “100 Most Influential Hispanics” in America by Poder Magazine.
Jeff Carroll is a scientist studying Huntinton’s Disease as an assistant professor in the department of psychology at Western Washington University. Previously he worked as a post-doctoral fellow in the lab of Marcy MacDonald at Massachusetts General Hospital/Harvard Medical School and as a PhD student with Michael Hayden at UBC. His research is focused on understanding the links between altered metabolism and CAG-expansion in the huntingtin gene. As well as conducting research, Jeff is a member of an HD family and himself carries the mutation which causes the disease. Jeff is the co-founder and co-editor-in-chief of HDBuzz - an internet platform for communicating research news to Huntington’s Disease patients. He is also a participant in the Personal Genome Project.
Rumi Chunara, PhD is an Instructor at Boston Children’s Hospital and Harvard Medical School, with a background in building biological sensors. Her interests are on using information obtained from personal sensors to describe and predict population-level public health issues. Her research focuses on building and using novel information sources to accelerate and augment healthcare in places with all different levels of healthcare infrastructure. Rumi is trained as an engineer and received her BS in electrical engineering with honours from Caltech, and her doctoral studies were through the Harvard-MIT Division of Health Sciences and Technology. She also has gained clinical experiences at hospitals in Pakistan, Kenya, and the USA.
George Church, PhD is Professor of Genetics, Harvard Medical School, Wyss Institute, Director of the Center for Computational Genetics, Director of the NIH Center for Excellence in Genomic Science (on human genome engineering), founder of PGP and guinea PiG#1. He is a member of the NAS and NAE and Franklin Laureate for Achievement in Science.
Jill Davies is a Genetic Counsellor and Director of Genetics at the Medcan Clinic, the largest preventive healthcare clinic in North America. With over 10 years of experience in genetic counselling, Jill works in partnership with Geneticist Dr. Lea Velsher to develop and deliver leading-edge preventive genetic services at Medcan. During her years in practice, she has provided a range of genetic services, from classical genetics to genomics. Her special interest is in the role of genetics in primary care and preventive medicine. Her focus is to bring the most advanced genetics knowledge to individuals to help them optimize health and manage risk for disease. Jill is a co-investigator on the Personal Genome Project, Canada and was the first Canadian to have her whole genome sequenced through this project. Jill received her Master of Science degree in Genetic Counselling from the University of Manchester, UK. She is a Canadian board certified genetic counsellor and an active member of the Canadian Association of Genetic Counsellors (CAGC) and the National Society of Genetic Counselors (NSGC).
Dr. Stephen Friend is the President of Sage Bionetworks. He is an authority in the field of cancer biology and a leader in efforts to make large scale, data-intensive biology broadly accessible to the entire research community. Dr. Friend has been a senior advisor to the NCI, several biotech companies, a Trustee of the AACR and is an AAAS and Ashoka Fellow as well as an editorial board member of Open Network Biology. Dr. Friend was previously Senior Vice President and Franchise Head for Oncology Research at Merck & Co., Inc. where he led Merck’s Basic Cancer Research efforts. Prior to joining Merck, Dr. Friend was recruited by Dr. Leland Hartwell to join the Fred Hutchinson Cancer Research Center’s Seattle Project, an advanced institute for drug discovery. While there Drs. Friend and Hartwell developed a method for examining large patterns of genes that led them to co-found Rosetta Inpharmatics in 2001. Dr. Friend has also held faculty positions at Harvard Medical School from 1987 to 1995 and at Massachusetts General Hospital from 1990 to 1995. He received his B.A. in philosophy, his Ph.D. in biochemistry and his M.D. from Indiana University.
Marnie Gelbart, Ph.D. is the Director of Program Development —and National Initiatives at the Personal Genetics Education Project ([pgEd last: pgEd image: http://www.pged.org/)) at Harvard Medical School. Marnie — is leading initiatives for advancing national awareness about the benefits as well as ethical, legal, and social implications of knowing one’s genome. She is the scientific advisor for pgEd’s curriculum and leads professional development trainings and classroom workshops for teachers and students. Marnie serves on the educational advisory committee for the upcoming genomics exhibit at the Smithsonian. She organizes the annual GETed Conference, bringing together leaders in genetics education to launch actionable strategies for ensuring that all individuals “GET educated,” and is developing the upcoming Map-Ed app to infuse a viral energy into genetics education.
Wally Gilbert, PhD is a Boston-born molecular biology pioneer, biotech entrepreneur, Harvard professor and 1980 Nobel laureate in Chemistry, for “contributions concerning the determination of nucleotide sequences in DNA”. His impact has also been felt as chairman of the Harvard Society of Fellows, co-founder of Biogen and Myriad Genetics, and many years of success in the field of digital art.
Robert C. Green, MD, MPH is a medical geneticist and a clinical researcher who directs the G2P research program (genomes2people.org) in translational genomics and health outcomes in the Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School. Dr. Green is principal investigator of the NIH-funded REVEAL Study involving randomized clinical trials to disclose a genetic risk factor for Alzheimer’s disease. He also co-directs the NIH-funded PGen Study, the first prospective study of direct-to-consumer genetic testing services and leads the MedSeq Project, the first NIH-funded research study to explore the use of whole genome sequencing in the clinical practice of medicine. Dr. Green is currently Associate Director for Research of the Partners Center for Personalized Genetic Medicine, and a Board Member of the Council for Responsible Genetics. He co-chairs the ACMG Working Group that is developing recommendations for management of incidental findings in clinical sequencing.
Stephen Heuser serves as the editor of the Ideas section for the Boston Globe. Prior to his current role, he covered life sciences for the Business section, and edited the Globe’s prize-winning coverage of higher education, science, and the environment.
Ben Heywood is the co-founder and president of PatientsLikeMe. Ben sets the growth and operational strategy for the company so that it can realize its chief goals: to help people living with disease improve their lives and to accelerate medical research. Since its inception, Ben has overseen all stages of PatientsLikeMe’s growth, including financing, the expansion of patient communities, and business partnerships. He has held a range of positions in the medical device industry and in residential real estate development. Early in his career, Ben served in manufacturing and business development roles at Target Therapeutics, the leading designer and manufacturer of microcatheter-based products for the treatment of stroke, which was later acquired by Boston Scientific. He is a frequent speaker at conferences and an expert source for media on patient issues and patient-centered care. He earned his bachelor’s degree in Mechanical Engineering from the Massachusetts Institute of Technology (MIT) and his master’s degree in business administration from UCLA’s Anderson Graduate School of Management.
Jack Hitt is the author of a new book, Bunch of Amateurs: A Search for the American Character. Most days, he’s a contributing writer to the New York Times Magazine. He occasionally contributes to the public radio program, This American Life. His book, Off the Road: A Modern-Day Walk Down the Pilgrim’s Route into Spain, was made into a motion picture, “The Way,” directed by Emilio Estévez and starring Martin Sheen. His work has won the Peabody, Livingston and Pope Awards.
Andreas Keller, PhD is a research associate in the Laboratory of Neurogenetics and Behavior at the Rockefeller University in New York and a graduate student in the Department of Philosophy at the City University of New York. At Rockefeller University Andreas studies the perceptual and behavioral consequences of variability in human odorant receptors. The human odorant receptor gene family is the largest gene family in the human genome and its members show remarkable genetic and functional variability. The sense of smell is therefore an excellent model for the study of genetic variability and its consequences in humans. Andreas is a Branco Weiss Fellow of the Society in Science Foundation and a NARSAD Young Investigator.
Rob Knight, PhD is an Assistant Professor in the Chemistry & Biochemistry Department at the University of Colorado, Boulder. His research includes studies of the relationships among RNA sequence, structure and function, and studies of microbial communities in different habitats, including the human microbiome. His lab is part of the Human Microbiome Project Data Analysis and Coordination Center, and he was recently selected for an HHMI Early Career Scientist Award. He received his Ph.D. in 2001 working with Laura Landweber at Princeton University, did postdoctoral work with Mike Yarus at the University of Colorado, and joined the Chemistry & Biochemistry Department in 2004 as the first hire made by the Colorado Initiative in Molecular Biotechnology.
Robert Krulwich covers science for National Public Radio and is Co-host of NPR’s “Radiolab.” His specialty is explaining complex subjects—science, technology, economics – in a style that is clear, compelling and entertaining. For several decades he was a correspondent at ABC and CBS News plus he hosted PBS’ Frontline, Nova Science Now and a BBC cultural show, “The Edge.” TV Guide called him “the most inventive network reporter in television.” He has explored the structure of DNA with a banana, created his own Italian Opera “Ratto Interesso” to explain how the Federal Reserve regulates interest rates, he pioneered the use of new animation on ABC’s Nightline, World News, and on NPR’s Internet site to explore cellular biology and subprime lending.

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John Lauerman is an award-winning reporter covering health and higher education for Bloomberg News in Boston. Recently he has [ chronicled his experiences as a participant in the Personal Genome Project. In 2011, he and his colleagues won a Polk Award and were Pulitzer finalists for a series of stories on for-profit colleges that recruit low-income students, often to leave them with debt and no degree. He’s been recognized for coverage of Harvard University’s $1 billion loss on risky debt-swap investments; the failed search for a vaccine against HIV; and the market withdrawal of the painkiller Vioxx. He’s been a fellow of the Blue Cross Blue Shield of Massachusetts Health Coverage program; the Kaiser Family Foundation’s program for science journalists and Harvard Medical School’s Media Fellowship. He lives with his wife and two children in Brookline, Massachusetts.
Daniel MacArthur, PhD is an Assistant Professor at Harvard Medical School, a group leader in the Analytic and Translational Genetics Unit at Massachusetts General Hospital, and an affiliate member of the Broad Institute of Harvard and MIT. His research focuses on the functional interpretation of large-scale human genome sequencing data, and the genetic diagnosis of rare, severe muscle diseases such as muscular dystrophy.

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Rodrigo Martinez is passionate about the crossroads of design + biology at all scales. As Life Sciences Chief Strategist at IDEO and member of the Health & Wellness practice, he tackles some of the most interesting challenges in health care, life sciences, and the emerging wellness space. Before joining IDEO, Rodrigo was a principal with The Boston Consulting Group in the health care practice. With Juan Enriquez, Rodrigo co-founded Harvard Business School’s Life Sciences Project and coined the term ‘bioeconomy’ in 1997. Educated at Mexico City’s ITAM and Harvard, Rodrigo mostly learns creativity, innovation, and prototyping from his 5-year-old daughter. Follow @RodrigoATCG on Twitter.
Holly Menninger, PhD is the Director of Public Science for Your Wild Life. Your Wild Life is an outreach and science communication program based at NC State University that engages the public in studying, understanding, and celebrating the biodiversity associated with our every day lives - from our belly buttons to our backyards. She earned a PhD in ecology from the University of Maryland, and has worked at the intersection of science and society - in science policy, science communication and natural resource management.
John Moult D.Phil. is a professor in the Institute for Bioscience and Biotechnology Research and the Department of Cell Biology and Molecular Genetics at the University of Maryland. He leads a research program in the area of the relationship between genetic variation and disease, with an emphasis on elucidating underlying molecular mechanisms. He has a long-standing interest in community-based strategies for scientific research, and is co-founder of CAGI (Critical Assessment of Genome Interpretation). CAGI is an organization that conducts community experiments to objectively evaluate computational methods for relating genetic information to phenotype, particularly the relationship between human genetic variation and disease. An aim of CAGI is to help clinicians and the broader community appreciate the strengths and limitations of variant interpretation methods, so aiding their appropriate application. A current CAGI challenge is to match each of a set of Personal Genome Project genomes to the corresponding phenotypic profiles, requiring the integration of the full range of genetic signatures.
Ryan Phelan is the Executive Director of Revive and Restore, a project within The Long Now Foundation, with a mission to provide deep ecological enrichment through extinct species revival. Phelan was founder and former CEO of DNA Direct, which provides genetic testing services and decision support for patients, providers and healthcare payors. In 2010, DNA Direct became a wholly owned subsidiary of Medco Health Solutions, one of the country’s largest pharmacy benefit managers. Phelan has been a strong consumer health advocate for the past 25 years, having started the first medical library for consumers in 1978. As Founding Director of Planetree, a nonprofit consumer health care organization, she helped create a national model for humanizing hospitals, and a national model for providing health information to the public, the Planetree Resource Center. In 1995 she founded Direct Medical Knowledge (DMK). DMK was an extensive consumer health web site highly regarded for its unique content depth and innovative search interface. It was acquired by WebMD in 1999. She was also co-founder of the ALL Species Foundation in 2002, a global science initiative to discover all life on Earth, which evolved into the Encyclopedia of Life. She is on the board of PersonalGenomes.org.
Steven Pinker is an experimental psychologist and one of the world’s foremost writers on language, mind, and human nature. Currently Harvard College Professor and Johnstone Family Professor of Psychology at Harvard University, Pinker has also taught at Stanford and MIT. His research on visual cognition and the psychology of language has won prizes from the National Academy of Sciences, the Royal Institution of Great Britain, the Cognitive Neuroscience Society, and the American Psychological Association. He has also received seven honorary doctorates, several teaching awards at MIT and Harvard, and numerous prizes for his books The Language Instinct, How the Mind Works, and The Blank Slate. He is Chair of the Usage Panel of the American Heritage Dictionary, and often writes for The New York Times, Time, and The New Republic. He has been named Humanist of the Year, Prospect magazine’s “The World’s Top 100 Public Intellectuals,” Foreign Policy’s “100 Global Thinkers,” and Time magazine’s “The 100 Most Influential People in the World Today.” His most recent book is The Better Angels of Our Nature: Why Violence Has Declined. (photo credit: Max Gerber)
Heidi Rehm, Ph.D., FACMG is the Chief Laboratory Director for the Laboratory for Molecular Medicine at the Partners Healthcare Center for Personalized Genetic Medicine and Assistant Professor of Pathology at Harvard Medical School. The lab focuses on the rapid translation of new genetic discoveries into clinical tests that can be used to improve patient outcomes, supporting the model of personalized medicine. Dr. Rehm is involved in defining standards for the use of next generation sequencing in clinical diagnostics through her committee roles at the American College of Medical Genetics and collaborative efforts with the CDC. Dr. Rehm is also involved in a major effort to develop and curate a universal clinical genomic variant database through collaborative efforts with NCBI and many other groups. Dr. Rehm also conducts research in hearing loss, Usher syndrome, cardiomyopathy, and healthcare IT.
Marc Salit is leading a group at the National Institute of Standards and Technology (NIST) dedicated to technology development and measurement infrastructure (standards, reference data, predictive models) for massively multiplexed genome-scale measurement methods. This “Multiplexed Biomolecular Science” group is a multidisciplinary team growing out of work to address microarray measurement science issues, and a long-running effort in technology and measurement science in microfluidics. Marc has worked extensively in measurement science in chemistry and physics, with emphasis on precision measurements, lab automation, algorithm development, measurement uncertainty, traceability, and standards development. His research is now focused on bringing experience from the chemical metrology community to the emerging biometrology community.
Stephen W. Scherer, PhD, DSc, FRSC is known for contributions to discovering the phenomena of global copy number variation (CNVs) of DNA and genes as the most abundant type of genetic variation in the human genome, Dr. Scherer leads one of Canada’s busiest laboratories. His group has discovered numerous disease susceptibility genes and most recently has defined CNV and other genetic factors underlying autism. He collaborated with Craig Venter’s team to decode human chromosome 7 and to generate the first genome sequence of an individual. Some 300 scientific papers document his work (cited >20,000 times). Professor Scherer holds the GlaxoSmithKline-Canadian Institutes of Health Research Chair in Genetics and Genomics at The Hospital for Sick Children and University of Toronto.
Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. She developed a diagnostic test and conducts clinical trials. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She is the author of more than 100 peer-reviewed articles. In her focus at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations.
Sarah Tishkoff, PhD is the David and Lyn Silfen University Professor in Genetics and Biology at the University of Pennsylvania. Dr. Tishkoff studies genomic variation in ethnically diverse Africans. Her research examines African population history and how genetic variation can affect a wide range of practical issues – for example, why humans have different susceptibility to disease, how they metabolize drugs, and how they adapt through evolution. Dr. Tishkoff is a recipient of an NIH Pioneer Award, a David and Lucile Packard Career Award, a Burroughs/Wellcome Fund Career Award and a Penn Integrates Knowledge (PIK) endowed chair.
Ed Wild is an NIHR Clinical Lecturer at UCL Institute of Neurology and works alongside Prof Tabrizi on clinical and experimental neurology research in Huntington’s disease, focused on accelerating and enabling clinical trials of novel therapies for HD. Ed graduated from Christ’s College, Cambridge University in 2001 and has worked in clinical neurology and neurodegeneration research since 2005. His PhD research on biomarkers and inflammation in HD was undertaken at UCL with Prof Sarah Tabrizi, and won him the 2009 Queen Square Prize in Neurology. In 2010 Ed co-founded HDBuzz, an online source of reliable, impartial, easy-to-understand information about Huntington’s research, for which he was awarded the 2012 Community Leadership Award from the Huntington Society of Canada. Ed has authored 5 book chapters and over 40 peer-reviewed publications. He serves on the advisory panel to the Huntington’s Disease Association, and the Scientific and Bioethical Advisory Committee of the European HD Network.

More speakers will be announced soon.