Presenters

Misha Angrist is Associate Professor of the Practice in Duke’s Social Science Research Institute and a Senior Fellow in its Initiative for Science & Society. He is the editor-in-chief of Genome magazine.
Annette Bakker is the President and Chief Scientific Officer at the Children’s Tumor Foundation. Annette, a PhD in Biochemistry, has leadership experience in both the academic and pharma/biotech research enterprise in Italy, Belgium, France and the USA. Intrigued by the observation that the path from great basic discoveries to equally great clinical benefit is bumpy and often inefficient, she joined the Children’s Tumor Foundation (CTF) in order to try to smoothen the path for neurofibromatosis, a rare genetic disorder. The team has built collaborative science networks, an open biobank, a centralized datahub at Sage, a patient registry, KOL networks, etc. Annette feels very strongly about involving the patient voice in every initiative since patients are partners rather than victims.
Madeleine Ball, PhD is a Shuttleworth Foundation Fellow, dedicated to applying “open” principles to change how we share and study human health data. Madeleine’s work primarily occurs through Open Humans, a project she co-founded that combines technology, advocacy, and community to enable a new, participant-centered approach for health data sharing, research, and citizen science.
Jason Bobe (@jasonbobe) is Associate Professor and director of the Sharing Lab at the Icahn Institute for Genomics and Multiscale Biology at the Mount Sinai School of Medicine. He attempts to produce research efforts that people actually want to join. At Mount Sinai, he is a leader of the Resilience Project, an effort to learn how some people are able avoid disease despite having serious risk factors. He is also co-founder of DIYbio.org and Open Humans Foundation.
Jasper A. Bovenberg is a practicing lawyer, admitted to the Bars of The Netherlands and New York. He counsels on all legal aspects of medicine’s perennial pursuit of cure, care and prevention. To combine his interest in science and his sense of justice, he has specialised in life sciences law, advising, dealing and litigating on private and public health law, privacy and data protection, intellectual property, sample, data and technology transfer, authorisation, pricing and reimbursement of diagnostics, drugs, devices and health apps.
Meg Doerr, a former botanist and middle school teacher, joined the genetic counseling community in 2006. Meg led the clinical development and implementation of Cleveland Clinic’s family history and risk assessment tool before joining the Governance team at Sage Bionetworks in 2015. At Sage, Meg’s efforts have been concentrated on supporting innovative, participant-centric approaches in open science. Her work has a strong focus on app-based research, including the ELSI issues associated with informed consent, research participation, and data sharing for secondary use in entirely remote, mobile platform-based research studies.
Deborah Estrin is a Professor of Computer Science at Cornell Tech in New York City. She is founder of the Health Tech Hub in the Jacobs Institute and directs the Small Data Lab at Cornell Tech. Her current research focus is on mobile health and small data, leveraging the pervasiveness of mobile devices and digital interactions for health and life management. Estrin co-founded the non-profit startup, Open mHealth and sits on several scientific advisory boards for early stage mobile health startups.
Ashley Farley has spent the last decade working both academic and public libraries, focusing on digital inclusion and providing access to scholarly content. Currently, Ashley is an Associate Officer of Knowledge and Research Services at the Bill & Melinda Gates Foundation. In this capacity, she serves on the core Open Access team, focusing on the foundation’s Open Access Policy’s implementation. This includes the development of Chronos, a newly created service for its grantees and staff, as well as, leading the implementation of Gates Open Research, a revolutionary publishing platform hosted by F1000. This work has sparked a passion for promoting open access, believing that freely accessible knowledge has the power to improve and save lives.
Kadija Ferryman is a cultural anthropologist whose research centers on the moral dilemmas emerging from the use of new technologies in biomedical research and health care. Using ethnographic methods, she examines the challenges that arise when technologies are tapped to do good, such as address racial disparities in health. Dr. Ferryman holds degrees in anthropology from Yale (BA) and the New School for Social Research (PhD). Currently, Dr. Ferryman is a Postdoctoral Scholar at the Data & Society Research Institute. She is researching the promise and pitfalls of data collection and analysis in precision medicine.  Before completing her PhD, she was a public policy researcher at the Urban Institute in Washington, DC.
Magnus Fontes is PhD and Professor of Mathematics at Lund University, Sweden (www.maths.lth.se/people/math-mfo/), working with modeling, analysis and visualization of complex systems. Fontes is co-founder of the bioinformatics software company Qlucore .  Since 2014, Fontes is at Institut Pasteur (IP) in Paris where he is Director of International Relations at the Institut Pasteur Centre for Bioinformatics Biostatistics and Integrative Biology (C3BI).
Fredericka Foster, thinkaboutwater.com.
Dr. Stephen Friend is the Chairman of the Board and Past-President of Sage Bionetworks. He is an authority in the field of cancer biology and a pioneer in the field of the genetics of gene expression, integrating system biology approaches to complex diseases. Dr. Friend co-founded Sage Bionetworks in 2009 on the belief that successful biomedical research requires the active participation of all stakeholders. Prior to co-founding and leading Sage as President, Dr. Friend was Senior Vice President and Franchise Head for Oncology Research at Merck & Co., Inc. where he led Merck’s Basic Cancer Research efforts. Formerly Dr. Friend along with Dr. Hartwell founded and co-led the Fred Hutchinson Cancer Research Center’s “Seattle Project”, an advanced institute for drug discovery and later they co-founded Rosetta Inpharmatics with Drs Hartwell and Hood. He received his M.D/Ph.D. from Indiana University. Dr. Friend was named an Ashoka Fellow for his work at Sage Bionetworks.
Bastian Greshake (@gedankenstuecke) is a biologist-turned-bioinformatician, currently working on his PhD in the Group for Applied Bioinformatics at the University of Frankfurt. When not doing research in fungal genomics he’s also an open* advocate. In 2011 he co-founded openSNP, a crowdsourced/citizen science open data project that puts personal genetics data into the public domain. Besides that he’s also actively indoctrinating the next generation of researchers on how to work in the open.
Lee Hartwell, PhD, led a research team at the Genetics Department, University of Washington, from 1968 to 1997 studying the genetic control of cell division in yeast. He was President and Director of the Fred Hutchinson Cancer Research Center from 1997-2010. He received the 2001 Nobel Prize in Physiology or Medicine. At Arizona State University, Dr. Hartwell works in healthcare and education. At Chang Gung University and Hospital, he leads a team validating biomarkers in clinical medicine.
David Haussler develops new statistical and algorithmic methods to explore the molecular function, evolution, and disease process in the human genome, integrating comparative and high-throughput genomics data to study gene structure, function, and regulation. As a collaborator on the international Human Genome Project, his team posted the first publicly available computational assembly of the human genome sequence. His team subsequently developed the UCSC Genome Browser, a web-based tool that is used extensively in biomedical research. He built the CGHub database to hold NCI’s cancer genome data, co-founded the Genome 10K project so science can learn from other vertebrate genomes, co-founded the Treehouse Childhood Cancer Project to enable international comparison of childhood cancer genomes, and is a co-founder of the Global Alliance for Genomics and Health (GA4GH), a coalition of the top research, health care, and disease advocacy organizations.
Peter Kapitein is a Patient Advocate of Inspire2Live I connect patients, researchers and clinicians to further research, treatments and care; in the Netherlands as well as international. I organize congresses, lobby the matrix of public authorities, health care organizations, insurance companies and health research institutes. I also give lectures and talks to help patients and society to fight cancer where possible and live with cancer with a good quality of life. I’m a writer of blogs, articles and books that also contributes to these topics. I’m able to show people their shining and radiant possibilities in every possible situation and let them exploit their talent in favour of others. I create Awareness and Hope where hope comes through vision.
Nancy Kass, ScD, is the Phoebe R. Berman Professor of Bioethics and Public Health at the Johns Hopkins Berman Institute of Bioethics and JHU Bloomberg School of Public Health; in 2009-2010, Dr. Kass worked for the World Health Organization in Geneva, Switzerland. She conducts work in ethics and public health, ethics in U.S. and global health research, and ethics and learning healthcare. She chairs the central IRB for the national Precision Medicine Initiative, served on the CDC Director’s subcommittee on ethics and was consultant to two Presidential bioethics advisory committees. Dr. Kass is an elected member of the Institute of Medicine and an elected Fellow of the Hastings Center.
Steven Keating has developed novel platforms for 3D printing buildings, biological wearables, and designed growth of the next generation of products through his doctoral work at MIT. Curiosity drove his research and also saved his life through the accidental discovery of a large astrocytoma brain tumor found in a voluntary academic scan. With his tumor successfully removed through awake brain surgery in 2014, Keating is an advocate for open patient data and curiosity. From gears to genomes, he is interested in exploring new design possibilities, open health data networks, and asking if we can have a “share” button for health. Keating is on the Board of Directors for the Open Humans Foundation, has participated as a member of the Precision Medicine Task Force, and he was recently named on the Forbes 30 Under 30 List for Healthcare. For more information, please visit www.stevenkeating.info or find him on Twitter (@stevenkeating).
Dr. Juergen Klenk is a principal with Deloitte Consulting LLP’s Monitor Strategy practice. He focuses on advancing Precision Medicine and Data Science in healthcare and biomedical research through the unique lens of his combined formal scientific training and entrepreneurial experience. His areas of expertise include strategy and business operations, digital transformation, data analytics, and science & technology. Dr. Klenk holds a Ph.D. in Mathematics and a Master’s degree in Mathematics and Physics from Eberhard-Karls-Universität Tübingen.
Helena Ledmyr is the Head of Development and Communications, and currently also the Acting Executive Director, at INCF (incf.org). Helena has a PhD in genetics & cardiovascular disease, with post-doc experience in gene therapy. After leaving academia she worked with science communication and administration at the Royal Swedish Academy of Sciences, and was after 3 years recruited to INCF. Helena is a member of the steering committee for the Swedish Network for Research Communication (forskom.org), and one of the moderators for Real Scientists (realscientists.org), a science communication project on twitter with 47k followers. She is frequently tweeting about these (and other) things as @Helena_LB.
Gaëll Mainguy is Director of Development and International Relations at CRI (Centre de Recherches Interdisciplinaires), a groundbreaking interdisciplinary research institute based in Paris. CRI develops innovative approaches to learning through science, which is stimulating a generation of young innovators to tackle sustainable development in hands-on ways, both in the lab and on the Web. In March 2017, CRI handed over a report on how to design an R&D system for a Learning Society to Najat Vallaud-Belkacem, the French Minister of Education, Higher Education and Research. Gaëll has a pronounced taste for breaking silos, and has developed projects successively in Neuroscience, Open science, Collective Intelligence, Urban studies, Energy and Sustainability for non-profit, public and private organizations.
Lara Mangravite, PhD is President of Sage Bionetworks. Previously, Dr. Mangravite served as Director of the Systems Biology research group at Sage Bionetworks where she focused on the application of collaborative approaches to advance understanding of disease biology and treatment outcomes at a systems level with the overriding goal of improving clinical care. Dr. Mangravite obtained a BS in Physics from the Pennsylvania State University and a PhD in Pharmaceutical Chemistry from the University of California, San Francisco. She completed a postdoctoral fellowship in cardiovascular pharmacogenomics at the Children’s Hospital Oakland Research Institute.
Anna McCollister-Slipp is the Chief Advocate for Participatory Research at the Scripps Translational Science Institute, where she is charged with bringing the expertise of patients, caregivers and community physicians into the design of health research. With Scripps, Anna recently formed VitalCrowd, a Web-based collaborative platform aimed at crowdsourcing the design of health research. In addition, she is co-founder of Galileo Analytics, a Visual Data Exploration and advanced data analytics company focused on democratizing access to and understanding of complex health data.
Anna’s passion for innovation in health data research is rooted in her personal experiences living with type 1 diabetes. As an entrepreneur and advocate, she speaks frequently about the promise of digital health, the imperative for patient data access and the need for improved outcomes measures for chronic disease.
Sean Martin McDonald is the CEO of FrontlineSMS and a Fellow at Stanford’s Digital Civil Society Lab. FrontlineSMS builds technology that helps public services use messaging in more than 200 countries. Sean’s work at Stanford centers around using trusts to embed public interest governance and fiduciary duties into digital spaces. He sits on the Board of the Center for Internet & Society and the Environmental Peacebuilding Institute. He’s the author of Ebola: A Big Data Disaster. Sean’s work focuses on the intersection of governance, law, technology, and equity.
Daniel Mietchen is a researcher in bioinformatics working as a contractor for the National Institutes of Health. Thematically, his research ranges from fossils and embryonic development to cold hardiness, music perception, brain morphometry, vocal learning and more recently semantic integration and data science. Within the open research community, his focus is on streamlining publication workflows all around the research cycle and on facilitating the reuse of open-access materials in educational contexts, and Wikimedia platforms in particular, with special emphasis on open licenses and technical interoperability. He has worked at the Fraunhofer Institute for Biomedical Engineering, at the Korea Basic Science Institute, at the Max Planck Institute for Human Cognitive and Brain Sciences, at the University of Jena, at the Museum für Naturkunde Berlin, and served as Wikimedian in Residence on Open Science at the Open Knowledge Foundation Germany. He led a team that received one of the inaugural Accelerating Science Awards for their Open Access Media Importer Bot in 2013.
Arikia Millikan is a humanistic technologist who specializes in the effective transmission of complex information online. With an educational background in engineering and psychology and over 10 years of experience in the cyber journalism industry, Arikia is uniquely poised to offer critical insight into the mechanics of online publishing and advise early-stage journalism ventures.
Ravi Pandya works in the Microsoft Genomics group on high-performance algorithms for genome alignment, assembly, and structural variation. He is one of the authors of the SNAP short-read aligner, which can produce high-quality genome alignments up to 10x faster than other state-of-the art aligners. He is also involved in the BeatAML collaboration led by Brian Druker’s lab at OHSU, to apply machine learning, predictive analytics, and systems biology to recommend personalized, targeted drug combinations for refractory leukemia patients.
Eleonore Pauwels is an international science policy expert, who specializes in the governance of emerging technologies, including genomics, digital and bio-engineering, participatory health design, and citizen science.  At the Wilson Center, she is the Director of Biology Collectives, and Senior Program Associate within the Science and Technology Innovation Program. With funding from the Robert Wood Johnson Foundation, Eleonore directs the Citizen Health Innovators Project. In this context, her research focuses on developing regulatory and governance mechanisms for the fast-growing ecosystem of health innovators, built around maker spaces and community bio labs, to support responsible innovation in distributed networks. With the Commons Lab at the Wilson Center, Eleonore contributes to building citizen science capacity to help public health actors globally prepare for and respond to mosquito borne diseases. Her blog can be found here and she tweets @EleonorPauwels.
Allison Randal is a software developer and open source strategist. She is president of the Open Source Initiative, board member at the Perl Foundation, and co-founder of the FLOSS Foundations group for open source leaders. She previously served as president of the Perl Foundation, chairman of the Board at the Parrot Foundation, and board member at the Python Software Foundation. She collaborates in the Debian, Python, and OpenStack projects, and currently works as a Director of Engineering for OpenStack at SUSE.
Fabienne Serriere is a hardware hacker, reverse engineer and unix sysadmin. For five years she open sourced hardware and software for vintage consumer knitting machines and recently crowdfunded a modern industrial knitting machine. She generates patterns using mathematical algorithms so no two items are the same. She dreams of becoming an astronaut and living on Mars one day.
Nick Shockey is the Director of Programs & Engagement at SPARC where he focuses on fostering and supporting communities that advance Open Access, Open Education, and Open Data. In this capacity, Nick founded the Right to Research Coalition, an international alliance of student organizations—collectively representing millions of students in over 100 countries around the world—that promote policies and practices that make open the default for research. In 2014, Nick launched OpenCon, a conference and community that works to identify, cultivate, and empower leaders within the next generation to advance openness in research and education. To date, OpenCon has reached more than 4,000 in-person participants across 80 countries and catalyzed dozens of new projects, organizations, and campaigns. Nick is also particularly passionate about working with libraries to support their institutions in adopting open practices for research and education.
For over 30 years artist Buster Simpson has collaborated with infrastructure and site design deploying an aesthetic of poetic utility to the public realm. Context, history natural and social phenomenal ecology and economy comprise his pallet.  Humor and rich metaphors distinguish his work, with many of his deceptively simple sculptures offering social engagements and solutions to real problems.
Geoffrey Siwo is currently a Research Scientist at IBM Research-Africa where he is initiating new projects in data driven healthcare. His main interest is in developing scalable technologies for large scale medical discovery in diverse human populations. He is a co-founder of Helix Nanotechnologies and an active participant in open innovation initiatives including Innocentive where he was awarded top prize for a computational pipeline for predicting human age from DNA, and recently a lead organizer in the first hackathon for malaria drug resistance with young African scientists.  He is the recipient of several awards including a TED Fellow, Young African Committed to Excellence (YACE) and Young Investigator (Sage Bionetworks). His work has been featured in several media including BBC, CNN, USA Today and Fast Company.
Susan Spencer is a former network architect and security analyst with a new career as an open fashion analyst, entrepreneur, and product developer. In 2010 she put out a call for open source developers to help solve problems with the fashion industry. In 2011 she created a open source prototype project for smart, scalable, and shareable custom-fit patterns.  In 2014 she and Roman Telezhynskyi teamed up to develop Valentina (valentina-project.org), the open source disruptive project for the Fashion industry. She is currently working on design and collaborative tools in VR and AR, and developing the Open Fashion Foundation 501(c)6 organization.
Matt Spitzer is the Community Manager at the Center for Open Science, and works with communities interested in using and expanding the public-goods infrastructure based on the Open Science Framework (OSF). He works directly with researchers, their institutions, and their funders to improve transparency, foster collaboration, and extend the visibility of research at all levels. Matt also works with journals, publishers, and societies, to incentivize openness. Find Matt online here: https://osf.io/8kcwm/
Paul Tarini, senior program officer at the Robert Wood Johnson Foundation, focuses on exploration, discovery, learning, and emerging trends that may be important to the Culture of Health, as well as fostering connections between health and health care.
Kaitlin Thaney is an open advocate and Senior Fellow at Mozilla. Most recently, Thaney served as the Director of Programs at the Mozilla Foundation, overseeing community-based programs in science, learning, advocacy, Internet of Things, and women and web literacy. She also founded and directed Mozilla’s first science program – the Mozilla Science Lab – empowering thousands of researchers, developers, and librarians to collaborate through fellowships, open source and project-based learning. Thaney has also helped launch and advise programs, governments and companies through work at Digital Science, the U.K. eLeadership Council, Creative Commons, MIT, Microsoft, and more. You can follow Thaney at @kaythaney on Twitter, or find out more at www.kaythaney.com.
Matthew Todd is Associate Professor at The University of Sydney and Founder of the Open Source Malaria Consortium, which seeks new medicines for malaria through open source principles (everything shared, anyone may participate, no patents). With Jaykumar Menon he founded the Open Source Pharma Foundation in 2015. He is interested in showing that open source pharma is a valuable competing model for the traditional pharmaceutical industry.
Eric Topol is a Professor of Genomics at the Scripps Research Institute, the Founder and Director of the Scripps Translational Science Institute (STSI). His principal scientific focus has been on the genomic and digital tools to individualize medicine—and the power that brings to individuals to drive the future of medicine. In 2016, Topol was awarded a $207 M grant from the NIH to lead a significant part of the Precision Medicine Initiative, the 1 million American prospective research program. Prior to coming to lead Scripps STSI in 2007, he led the Cleveland Clinic to become the #1 center for heart care and was the founder of a new medical school there. He has published 2 bestseller books on the future of medicine: The Creative Destruction of Medicine and The Patient Will See You Now.
Dan E. Webster obtained his PhD in Cancer Biology from Stanford University, where his research combined bioinformatics and functional genomics to discover functional elements in the human genome driving skin development, tumorigenesis, and melanoma drug resistance. He is currently a Damon Runyon Fellow at the National Cancer Institute working with Dr. Louis Staudt on B cell lymphoma genomics. Dr. Webster is also the founder and lead iOS developer for Mole Mapper, a ResearchKit/ResearchStack app and study run by OHSU and Sage Bionetworks that enables participants to map, measure, and monitor their moles over time to prevent melanoma.
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. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.
Gary Wolf is the co-founder of The Quantified Self an international collaboration among makers and users of self-tracking tools who share an interest in supporting new discoveries grounded in accurate observation. He is a visiting professor at Hanze University of Applied Technology in Holland.
Elizabeth Yeampierre is an internationally recognized Puerto Rican environmental and climate justice leader of African and Indigenous ancestry born and raised in New York City. She is Executive Director of UPROSE, Brooklyn’s oldest Puerto Rican community based organization. Her award winning vision for an inter-generational, multi-cultural and community led organization is the driving force behind UPROSE. She is a long-time advocate and trailblazer for community organizing around just, sustainable development, environmental justice and community-led climate adaptation and community resiliency in Sunset Park. Prior to assuming the Executive Director position at UPROSE, Ms. Yeampierre was the Director of Legal Education and Training at the Puerto Rican Legal Defense Fund, Director of Legal Services for the American Indian law Alliance and Dean of Puerto Rican Student Affairs at Yale University.