Michael M. Burgess is Professor and Chair in Biomedical Ethics at the W. Maurice Young Centre for Applied Ethics and the Department of Medical Genetics at the University of British Columbia. He is also Principal of the College for Interdisciplinary Studies. His undergraduate degree is in philosophy and religion, and his graduate degrees are in philosophy with a concentration in bioethics where he also studied qualitative sociology and feminist theory. Most recently his work has focused on science and technology policy and public engagement based on theories of deliberative democracy.

With Peter Danielson he is PI of the Genome Canada/Genome BC-funded “Building a GE³LS Architecture” and is a collaborator on other genome science projects. He recently completed a deliberative engagement on biobanks in BC, and collaborated on similar events at the Mayo Clinic and in Western Australia. Most recently he and Kieran O’Doherty led a public deliberative engagement related to salmon genomics and another related to the governance of the BC BioLibrary.




Wylie Burke is Professor and Chair of the Department of Bioethics and Humanities at the University of Washington (UW), and Director of the UW Center for Genomics and Healthcare Equality. She received a PhD in Genetics and an MD from UW. She completed a medical residency in Internal Medicine and was a Medical Genetics Fellow, also at UW. She is an Adjunct Professor in the Departments of Medicine and Epidemiology, a Member of the Fred Hutchinson Cancer Research Center, and a Member of the UW Institute for Public Health Genetics. Her academic work addresses the ethical and policy implications of genetic information in research, medicine and public health. Dr. Burke is a member of the Institute of Medicine and the Association of American Physicians, and is a Fellow of the American College of Physicians. She served on the Secretary’s Advisory Committee on Genetic Testing (1999-2002) and the National Human Genome Advisory Council (1999-2003), and was President of the American Society of Human Genetics in 2007.

Wylie Burke's Speaker Abstract: Genomics and Personalized Medicine




Timothy Caulfield has been Research Director of the Health Law Institute at the University of Alberta since 1993. In 2001 he received a Canada Research Chair in Health Law and Policy. He is a Professor in the Faculty of Law and the School of Public Health, and is the editor for the Health Law Journal and Health Law Review. Through involvement in a variety of interdisciplinary research endeavours, he has published over 150 articles and book chapters. He is a Senior Health Scholar with the Alberta Heritage Foundation for Medical Research (AHFMR), the Principal Investigator for the Genome Canada project on the regulation of genomic technologies, the theme leader in the Stem Cell Network and has several projects funded by the Canadian Institutes of Health Research (CHIR). Professor Caulfield is and has been involved with a number of national policy and research ethics committees including the Canadian Biotechnology Advisory Committee, Genome Canada’s Science Advisory Committee and the Federal Panel on Research Ethics. He is a member of the Royal Society of Canada and the Canadian Academy of Health Sciences. 




Professor Donald Chalmers is Dean of the Law School, University of Tasmania and a Foundation Fellow of the Australian Academy of Law.
He is currently Chair of the Gene Technology Ethics and Community Consultative Committee, Deputy Chair of the National Health and Medical Research Council (NHMRC) Embryo Research Licensing Committee and a member of the NHMRC Human Genetics Advisory Committee. He is a member of the international Human Genome Organisation Ethics Committee. Since 2004 Professor Chalmers has served as a member on some the International Scientific Review Panels of Genome Canada.
From 1994 to 2000, Professor Chalmers was Chair of the NHMRC Australian Health Ethics Committee, which published the National Statement on Ethical Conduct in Research involving Humans 1999 (since revised and replaced in 2007). His major research interests are health law and genetics, research ethics and law reform.

Professor Donald Chalmers' Speaker Abstract: Do Yesterday’s Research Ethics fit Personalized Medicine in the Genome Era?




Mildred Cho is an Associate Professor in the Division of Medical Genetics of the Department of Pediatrics at Stanford University, and Associate Director of the Stanford Center for Biomedical Ethics and Director of the Center for Integration of Research on Genetics and Ethics, an NIH Center for Excellence in Ethical, Legal and Social Implications (ELSI) Research. She received her B.S. in Biology in 1984 from the Massachusetts Institute of Technology and her Ph.D. in 1992 from the Stanford University Department of Pharmacology. Her post-doctoral training was in Health Policy as a Pew Fellow at the Institute for Health Policy Studies at the University of California, San Francisco and at the Palo Alto VA Center for Health Care Evaluation. Dr. Cho's major areas of interest are the ethical and social impacts of genetic research and its applications, and how conflicts of interest affect the conduct of academic biomedical research. Her current research projects examine ethical and social issues in research on human genetic variation and natural selection, stem cells, genetics of behavior, and microbial genome research.

Mildred Cho's Speaker Abstract: Ethical Challenges for Research on Personal Genomics




George Church is Professor of Genetics at Harvard Medical School and Director of the Center for Computational Genetics. His PhD from Harvard in Biochemistry & Molecular Biology (with W. Gilbert) included the first direct genomic sequencing method (1984), initiating the Human Genome Project when he was a Research Scientist at Biogen Inc. and a Monsanto Life Sciences Research Fellow at UCSF (with G. Martin). He invented the broadly-applied concepts of molecular multiplexing and tags, homologous recombination methods, and array DNA synthesizers. Technology transfer of automated sequencing and software to Genome Therapeutics Corp. resulted in the first commercial genome sequence (the human pathogen, H. pylori, 1994). This multiplex solid-phase sequencing evolved into polonies (1999), ABI-SOLiD (2005), open-source Polonator.org (2007) and Personal Genomes.org. He has served in advisory roles for 12 journals (including Nature Molecular Systems Biology), 5 granting agencies and 24 biotech companies (e.g., 23andme and recently founded Codon Devices, Knome and LS9). Current research focuses on integrating biosystems-modeling with Personal Genomics and synthetic biology.  




Celeste Michelle Condit is a Distinguished Research Professor in the Department of Speech Communication at the University of Georgia. Her work on the social impacts of genetics has been supported by the National Institutes of Health's "ELSI" program (Ethical, Legal and Social Implications), and she has been a project PI in the CDC funded “Southern Center for Communication, Health and Poverty” at the University of Georgia. She has co-edited (with Bonnie Dow) both Women’s Studies in Communication and Critical Studies in Media Communication. In addition to approximately a hundred scholarly essays, she has published five books, including The Meanings of the Gene (University of Wisconsin Press, 1999), and Crafting Equality: America’s Anglo-African Word (with John Lucaites, University of Chicago, 1994). She was elected to the National Communication Association’s “Distinguished Scholars” in 2002.

Celeste M. Condit's Speaker Abstract: 23andMe on the Multi-media: Finding the Ranges for Personal Genomics
  




Professor Abdallah S Daar is Professor of Public Health Sciences and of Surgery at the University of Toronto. He is also Senior Scientist and Director of the Program on Ethics and Commercialization, McLaughlin-Rotman Centre for Global Health, University Health Network and University of Toronto. His major research focus is on the use of life sciences to ameliorate global health inequities, with a particular focus on building scientific capacity and increasing innovation in developing countries, in addition to studying how technologies can be rapidly taken from “lab to village”.
Professor Daar’s award-winning work has spanned biomedical sciences, surgery, organ transplantation, bioethics and global health. His major international awards include the Hunterian Professorship of the Royal College of Surgeons of England and the UNESCO Avicenna Prize for Ethics of Science. He is a fellow of the Royal Society of Canada, the New York Academy of Sciences, the Canadian Academy of Health Sciences and of the Academy of Sciences of the Developing World (TWAS). He has published 5 books, and over 300 research articles and chapters in booksDaar is a member of UNESCO’s International Bioethics Committee and the Ethics Committee of the Human Genome Organization. He was a member of the Africa Union High Level Panel on Modern Biotechnology, which published its seminal report, “Freedom to Innovate”, in 2007.




Dr. James Evans directs Adult/Cancer genetics services and The Bryson Program in Human Genetics at the University of North Carolina (Chapel Hill). He is Editor-in-Chief of Genetics in Medicine, the official journal of the American College of Medical Genetics. After obtaining his MD and PhD from the University of Kansas he served as resident and chief resident of Internal Medicine at The University of North Carolina. He trained in medical genetics at The University of Washington in Seattle, and he is board certified in Internal Medicine, Medical Genetics and Molecular Diagnostics. Dr. Evans is interested in cancer genetics, pharmacogenomics, and the broad issue of the use of genetic information. He is an advisor to the US Secretary of Health and Human Services on the subject of “Genetics, Health and Society”. He has been involved nationally and internationally in education of high courts about genetic and scientific matters. In 2004 he was a principle organizer of a UN conference in Chile which was attended by over 80 nations and addressed international scientific disparities.

Dr. James Evan's Speaker Abstract: Genomic Analysis in Clinical Medicine; Too much information or not enough?




Dr. W. Gregory Feero obtained his M.D, Ph.D. from the University of Pittsburgh School of Medicine with a Ph.D. in Human Genetics. He then completed his residency in Family Medicine at the Maine-Dartmouth Family Medicine Residency Program in Augusta, ME. After 5 year in practice in Maine, Dr. Feero accepted a position at the National Human Genome Research Institute, National Institutes of Health, as Senior Advisor to the Director for Genomic Medicine, and became Chief of the Genomic Healthcare Branch. Dr. Feero is currently Research Director for the Maine – Dartmouth Family Medicine Residency Program, where he is an Associate Professor in the Department of Community and Family Medicine of Dartmouth Medical School. He sees patients at Four Seasons Family Practice in rural Fairfield, ME. Dr. Feero is board certified in Family Medicine and holds licenses in Maine and West Virginia. He has authored numerous peer-reviewed and invited publications.

Dr. W. Gregory Feero's Speaker Abstract: Personalized Medicine




David A. Flockhart, M.D., Ph.D. is the Chief of the Division of Clinical Pharmacology at the Indiana University School of Medicine and the Harry and Edith Gladstein Chair in Cancer Pharmacogenomics. He came to Indiana University in 2001 from Georgetown University Medical Center, where he served as the Francis Cabell Brown Chair and Chief of the Division of Clinical Pharmacology and Director of the Pharmacogenetics Core laboratory. His research is focused on clinically-relevant applications of pharmacogenetics. He is from Edinburgh, Scotland and obtained his undergraduate education in Biochemistry at the University of Bristol, England. He subsequently obtained a PhD from the Welsh National School of Medicine, and an MD from the University of Miami School of Medicine. He has published more than 150 articles, reviews and book chapters on drug interactions and clinical pharmacogenomics, and is the principal investigator of COBRA, the Consortium on Breast Cancer Pharmacogenomics, and of the NIGMS funded Clinical Pharmacology training program at Indiana University.
Dr. Flockhart is an active teacher. He teaches the Clinical Pharmacogenetics portion of the annual course in Clinical Pharmacology at the National Institutes of Health, in Bethesda, MD and the Pharmacogenetics section of the Annual Review in Clinical Pharmacology provided by the ASCPT as well as the "Clinical Pharmacology Update" module at the Annual Meeting of the American College of Physicians and he coordinates the bi-annual review of Clinical Pharmacology conducted by the ASCPT. His website www.drug-interactions.com, a tool to improve rational prescribing, has been cited by the Washington Manual of Medicine and Therapeutics.




As Editor and Publisher, Richard Gallagher is responsible for developing The Scientist as a business in addition to directing editorial content. He was brought on in 2002 to resurrect the fortunes of The Scientist, both in print and online, and has ushered in a new era of popularity for the publication. The Scientist has recently been named “Magazine of the Year” by the American Association of Business Publication Editors, for the second successive year. Online, the-scientist.com has over a million registrants and receives 700,000 page views per month.
Previously Richard was Chief Biology Editor and then publisher of Nature in London, during which time the journal’s impact factor increased dramatically. As Chief Biology Editor he negotiated publication of the draft human genome sequence papers, and oversaw both editorial and business components of this publication, which had the largest circulation and biggest income of any issue of Nature in it’s 138 years of publication.
In the mid-nineties Dr. Gallagher was the Office Head and Senior Editor of Science magazine’s Europe Office in Cambridge, England where he was responsible for papers published in immunology, infectious disease, ecology and evolutionary biology. Prior to that, he was Editor of Immunology Today, a popular review journal.
He was awarded his PhD in cell biology from the Glasgow University in Scotland and was the Wellcome Trust Lecturer in Immunology at Trinity College, University of Dublin, Ireland.




Dr. Gail Geller, ScD, MHS, is a Professor at the Johns Hopkins (JH) School of Medicine with a joint appointment in the Bloomberg School of Public Health. She is also a core faculty member in the Berman Institute of Bioethics. Focused on the ethical and psychosocial implications of genetic testing in the adult, pediatric and family contexts, Dr. Geller’s work has advanced understanding of patient, provider and public interpretation, communication and decision-making for new genetic technologies. She has been a member of the NIH Cancer Genetics Studies Consortium and the Informed Consent Consortium. She has been involved in educational initiatives including the JH/NHGRI Genetic Counseling Training Program, and the JH Institute for Spirituality & Medicine CME Program, “What Does it Mean to Be Human: Public Discourse on Genetics, Ethics and Spirituality”. Dr. Geller was involved with ELSI in setting the agenda for the next 10 years of NHGRI research. She sits on the Advisory Board of the Center for Genetics Research Ethics and Law (CGREAL) at Case Western Reserve University. She has consulted for groups including the Consensus Panel on “Emerging Ethical Issues in Smoking and Genetics”, and the CDC Program in Public Health Genetics.




Dr. Michael Hayden is a Killam Professor of Medical Genetics at the University of British Columbia and Canada Research Chair in Human Genetics and Molecular Medicine. He is also the Director of the Center for Molecular Medicine and Therapeutics (CMMT) in Vancouver, Canada; a gene research center within UBC at the Child and Family Research Institute.
Michael is the recipient of numerous prestigious honours and awards. Most recently, in June 2009, Michael was awarded an Honorary Doctorate of Science by the University of Alberta. In 2008 he was named Canada’s Health Researcher of the Year by CIHR and was also one of the five finalists of the Globe and Mail’s 2008 Nation Builder competition which is equivalent to Canada’s Person of the Year. In 2007 he received the Prix Galien, which recognizes the outstanding contribution of a researcher to Canadian pharmaceutical research. He was awarded the Leadership and Research Excellence award by the National Centres of Excellence in 2004 and the Lifetime Achievement award by the Huntington Society of Canada in 2001. Michael was elected to the Canadian Academy of Health Sciences in 2005, the Royal Society of Canada in 1995, the Board of the American Society of Human Genetics in 1994 and the American Society of Clinical Investigation in 1992. Michael sits on the Gairdner Medical Review selection panel, and participates in the selection of the Gairdner International Science winners each year.
Michael is presently spear-heading international fundraising efforts for a community centre for HIV/AIDS-affected children in Masiphumelele Township, Cape Town, South Africa. This centre aims to promote responsible sexual behaviors among at-risk youth, empower HIV/AIDS-affected youth, and build a sense of self and community-participation within the township.




Stuart Hogarth is a member of the Global Biopolitics Research Group at the Centre for Biomedicine and Society at King’s College London. He is working on the EU Remedie Project looking at the innovation strategies employed by states competing for position in the emerging market of regenerative medicine.
Stuart has a longstanding interest in the policy issues surrounding the regulation of genetic tests. Prior to joining CBAS he worked at Loughborough University on a project investigating claims making in the nutrigenomics industry and was at the University of Cambridge on a project looking at the evaluation of genetic tests for common diseases; in particular the policy options for improving both the regulatory framework for genetic tests and the incentives needed to encourage test developers to generate clinical data on new tests. For this work he received an FDA Leveraging / Collaboration Award. He has produced two reports for Health Canada, one on international developments in the regulation of pharmacogenomics and another on the policy implications of novel molecular diagnostics. He has produced briefings for the Human Genetics Commission and the European Commission on the regulation of genetic testing. Stuart continues to play an active role in development of regulation in this area. He was lead author of a response to the recent GHTF consultation on the regulation of IVD devices and has participated in the drafting of the OECD’s guidelines on quality assurance for molecular genetic testing; helped the Human Genetics Commission to organise and run a workshop on the regulation of direct-to-consumer genetic tests, and participated in the Aspen Task Force on Personalised Medicine exploring alternative regulatory options for genetic testing in the United States. An experience presenter, Stuart has spoken to policy makers and regulators in the United States, Canada and Europe and has been on the organising committee for international meetings on genetic testing in the United States and Japan.




Eric T. Juengst, Ph.D, is Professor of Bioethics at the Case Western Reserve University School of Medicine in Cleveland, Ohio. Previously, he has taught medical ethics and the philosophy of science on the faculties of the medical schools of the University of California, San Francisco and Pennsylvania State University, and from 1990 to 1994 he was the first Chief of the Ethical, Legal and Social Implications Branch of the National Center for Human Genome Research at the U.S. National Institutes of Health. He received his B.S. in Biology from the University of the South in 1978 and his Ph.D. in Philosophy from Georgetown University in 1985. His research interests and publications focus on the conceptual and ethical issues raised by new advances in human genetics and biotechnology. Since coming to CWRU in 1994, he has led collaborative research projects on ethical issues in gene transfer technology, the biomedical control of human aging, “community engagement” in genomic research, and human genomic initiatives like the Human Microbiome Project In 2004, he was awarded a “Center of Excellence in Ethics Research” grant from the U.S. National Institutes of Health to support the creation of new interdisciplinary research program, the CWRU Center for Genetic Research Ethics and Law (CGREAL), which he now directs.




Kazuto Kato is Associate Professor of Science Communication and Bioethics at the Institute for Research in Humanities and Graduate School of Biostudies, Kyoto University. He has a PhD degree in developmental biology from Kyoto University. After finishing his postdoctoral research at the Wellcome Trust/Cancer Research UK Gurdon Institute at the University of Cambridge, he started to work in the interface between bioscience and society. He has been working on science communication as well as ethical and social issues of bioscience. He serves as members of the HUGO (Human Genome organization) ethics committee and of the Informed consent and Privacy protection Working Group of the ICGC (International Cancer Genome Consortium). He was also a member of the ELSI group in the International HapMap project. His recent work includes "Mouse model: What do Japanese life sciences researchers mean by this term?" (2009) Journal of Science Communication
08(01) (with Jin Higashijima) and “Race and ethnicity in the human genome research” (2009) in Representations of Race and its Social Reality (ed. Yasuko Takezawa), Iwanami Shoten (in Japanese).




Dr. Jane Kaye is Wellcome Trust Fellow in Medical Law at the Ethox Centre, University of Oxford. She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). She was admitted to practice as a solicitor/barrister by the Australian Capital Territory Supreme Court in 1997. She is a member of the Faculty of Law, University of Oxford and has taught both Regulation and Medical Law and Ethics courses at the University of Oxford. Her research in the area of law and genomics focuses on the development of innovative technologies and the legal issues of intellectual property rights, privacy, confidentiality, data protection and negligence, as well as the broader issues of the public interest, global governance and regulation. Her socio-legal research is based on issues that have implications for clinical and medical research practice. She is involved in a number of expert committees focusing on the issues surrounding biobanks within Europe and internationally. 




Dr. Laurence Kedes (BS, 1961; MD, 1962) is the William M. Keck Professor Biochemistry & Molecular Biology and a Professor at the Keck School of Medicine. He recently stepped down as founding Director of the University of Southern California (USC) Institute for Genetic Medicine (IGM). Prior to USC, Kedes had a 20-year career on the Stanford Faculty of Medicine where he pioneered molecular genetics and eukaryotic gene expression. Dr. Kedes has made numerous contributions to understanding gene expression in generating cellular phenotypes. His interests in DNA sequences led him to produce (with P. Friedland and E. Feigenbaum) one of the first sets of computer programs (MOLGEN) to handle DNA sequence and other molecular genetic information. These efforts led to the creation of BioNet, a national, NIH-funded computer network (pre-internet) to archive DNA sequence information. The operation was the direct forerunner of GenBank, the international repository of all genetic sequences and helped form the foundation for the field of bioinformatics. In 2005 he became the Scientific Director and Senior Advisor of the non-profit X PRIZE Foundation and helped lead the effort to create the $10 million Archon X PRIZE for rapid, inexpensive genome sequencing.






Bartha Maria Knoppers, PhD, is Director, Centre of Genomics and Policy, McGill University, Dept. of Human Genetics, Fac. of Medicine. She is former Chair of the International Ethics committee of the Human Genome Organization, (1996-2004) and was a member of the International Bioethics Committee of the United Nations, Educational, Scientific and Cultural Organization which drafted the Universal Declaration on the Human Genome and Human Rights (1993-1997). Co-Founder of the International Institute of Research in Ethics and Biomedicine, she also served on the Board of Genome Canada, and in 2007, became Chair of the Ethics Working Party of the International Stem Cell Forum as well as founding the international Public Population Project in Genomics and CARTaGENE.

Professor Knoppers has received Doctorates Honoris Causa from the University of Waterloo, Université de Paris V, France and McMaster University, Ontario and the University of Alberta. In 2002, she was elected Fellow of the American Association for the Advancement of Science, selected as one of the 50 nation builders in Canada by the Globe and Mail, and named Officer of the Order of Canada. Elected Fellow of The Hastings Center (Bioethics), New York, and member of the International Ethics Committee of the World Anti-Doping Agency, she became a Fellow of the Canadian Academy of Health Sciences in 2005. She was elected Governor of the Quebec Bar in 2006 and in 2007 was chosen Advocatus Emeritus. In 2009, was named Distinguished Visiting Professor of the Netherlands Genome Initiative





Barbara A. Koenig, Ph.D., is an anthropologist who studies contemporary biomedicine, working within the interdisciplinary field of bioethics. She is Professor of Biomedical Ethics and of Medicine at the College of Medicine, Mayo Clinic, and Faculty Associate at the Center for Bioethics, University of Minnesota. She serves as Co-Director of Mayo Clinic’s Program in Professionalism and Bioethics. Before moving to the Mayo Clinic, she served as Executive Director of the Stanford University Center for Biomedical Ethics for a decade. Koenig has pioneered the use of empirical social science methods in the study of ethical questions in science, medicine, and health. Her methodological expertise is in the design of research using multiple methods -- both quantitative and qualitative -- and integrating empirical research findings into normative ethical analysis, thus informing the development of health policy and bioethics practices. Her research focuses on new biomedical technologies, particularly those within the genomic sciences. Koenig served on the Department of Health and Human Services “Secretary’s Advisory Committee on Genetic Testing,” a group charged with making recommendations about federal oversight of genetic testing in the U.S. She also served on the Ethics Advisory Committee for the Director of the U.S. Centers for Disease Control. Koenig’s National Institutes of Health-funded research examines: 1) the implications of emerging knowledge in the genetics and neurobiology of addiction, and, 2) a study of human subjects protections in DNA biorepositories linked to electronic medical records. She was awarded a grant from the Greenwall Foundation to investigate DNA “identifiability.” Koenig is currently collaborating with the University of British Columbia in a study of deliberative community engagement as a means of engaging the public about establishing DNA biobanks. As part of Mayo Clinic’s initiatives in “Individualized Medicine” she is CoPI of a “proof of principle” clinical trial that examines direct-to-consumer provision of predictive genetic risk assessment. Her work has appeared in JAMA, Journal of General Internal Medicine, Annals of Internal Medicine, Journal of General Internal Medicine, Issues in Science and Technology, The Hastings Center Report, Medical Anthropology Quarterly, Journal of Clinical Ethics, Chest, Journal of Women’s Health, The Gerontologist, Radiology, Cambridge Quarterly of Healthcare Ethics, Nature Medicine, Archives of Internal Medicine, Journal of Law, Medicine and Ethics, Genome Biology, Yale Journal of Health Policy, Law, and Ethics, and Journal of Pain and Symptom Management. Her most recent book is a collection of essays titled, Revisiting Race in a Genomic Age, Rutgers University Press (2008). She is an elected fellow of the Hastings Center.




Jeantine Lunshof, PhD, is a philosopher and bioethicist. Since 1992, she has been involved in international research collaborations on ethical issues in human genetics. She is an Assistant Professor at the Department of Social Medicine and the European Centre for Public Health Genomics, Maastricht University, The Netherlands. Further affiliations are with the Department of Molecular Cell Physiology, VU University, Amsterdam; The Netherlands Institute for Systems Biology (NISB); and CESAGen, Cardiff University, UK. Her current work focuses on the ethical and public-policy aspects of pharmacogenomics, genome-wide association studies and personalized medicine, and on the philosophy of systems biology. Jeantine has been an ethics consultant to the Personal Genome Project at Harvard Medical School, Genetics Department, since early 2006. She is an affiliate member of the NIH Pharmacogenetics Research Network (PGRN), and a Member of the Public Population Project in Genomics (P3G) Consortium.

Jeantine Lunshof's Speaker Abstract: Research Ethics Challenges Presentation title: Ethics, Governance & Personal Genomes – No Steady State




Paul Martin is Associate Professor in Science and Technology Studies and Deputy Director of the Institute for Science and Society, University of Nottingham. He has two main areas of research interest. The first is the ethical, legal and social issues associated with emerging medical technologies and the second focuses on the commercialisation of biotechnology and expectation dynamics in medial innovation. His research has previously examined the development of gene therapy, genomics, pharmacogenetics, stem cells and regenerative medicine. Dr Martin has advised the European Parliament, the Conseil d'Analyse Economique (part of the French Prime Minister's Office), the UK Department of Trade and Industry and the Wellcome Trust. He is a member of the Editorial advisory Boards of Sociology of Health and Illness and New Genetics and Society.

Paul Martin's Speaker Abstract: Who wants personal genomics? The commercial development of DTC genetic testing and the problem of creation new markets for novel technologies




Amy L. McGuire, JD, PhD, is an assistant professor of medicine and medical ethics with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She received her BA in psychology, summa cum laude, from the University of Pennsylvania, her JD, summa cum laude, from the University of Houston, and her PhD from the Institute for the Medical Humanities at the University of Texas Medical Branch. Dr. McGuire’s research focuses on legal and ethical issues in genetics and genomics, with a particular interest in genetic research and personalized genomic medicine. She is currently studying research participant attitudes toward broad data sharing in genome-wide association studies and consumer expectations regarding the clinical integration of direct-to-consumer personal genome testing services. Her research is funded by the NHGRI ELSI program and the Greenwall Foundation Faculty Scholars Program in Bioethics. Dr. McGuire is a member of the 1000 Genomes Sampling and ELSI Committee, the Working Group on Participant and Data Protection (PDP) for the Genetic Association Information Network (GAIN), and is on the advisory board for the X PRIZE in Genomics.

Amy McGuire's Speaker Abstract




Dr. Eric Meslin is Director of the Indiana University (IU) Center for Bioethics, Associate Dean for Bioethics and Professor of Medicine and Medical and Molecular Genetics in the IU School of Medicine. He is Professor of Philosophy in the School of Liberal Arts, and Co-Director of the IUPUI Signature Center Consortium on Health Policy, Law, and Bioethics. He came to IU (2001) from the National Bioethics Advisory Commission (NBAC), where he had been Executive Director since 1998. A Canadian by birth, Dr. Meslin received his BA in Philosophy from York University, and his MA and PhD from the Bioethics Program in Philosophy at the Kennedy Institute of Ethics at Georgetown University. He has more than 80 publications on topics from international health research to science policy including Belmont Revisited: Ethical Principles for Research with Human Subjects (2005) co-edited with J. F. Childress and H. T. Shapiro. He has been a consultant to the WHO, the US Observer Mission to UNESCO, the CIHR and sits on committees including the Stem Cell Oversight Committee of the Juvenile Diabetes Research Foundation and the Board of Directors of Genome Canada. In 2008 he was appointed a Chevalier de L’Order Nationale du Mérite by the President of France.





Dr. Pilar N. Ossorio is Associate Professor of Law and Bioethics at the University of Wisconsin at Madison (tenured in the Law School and in the School of Medicine & Public Health, and affiliated with the Graduate Program on Population Health). Prior to taking her position at UW, she was Director of the Genetics Section of the Institute for Ethics at the American Medical Association, and taught as an adjunct professor at the University of Chicago School of Law
Dr. Ossorio received her Ph.D. in Microbiology and Immunology from Stanford University in 1990. She went on to complete a post doctoral fellowship in Cell Biology at Yale University School of Medicine. In 1993 she served on the Ethics Working Group for President Clinton’s Health Care Reform Task Force. In 1994 she left the laboratory for a position with the Department of Energy’s Program on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. She then went on to law school and received her JD from the University of California School of Law in 1997. During law school she received several awards for outstanding legal scholarship, and following graduation she was elected to the Order of the Coif, a national legal honor society.
Dr. Ossorio is a fellow of the American Association for the Advancement of Science. She has participated in federal advisory committees for the U.S. Food and Drug Administration, the National Institutes of Health, and the National Library of Medicine. She currently serves on the Human Embryonic Stem Cell Research Advisory Committee for the Institute of Medicine (IOM), and has served on several previous IOM boards and committees. Her current research interests include: governance of large scale research projects; community consultation as an ethics method; issues at the intersection of race, research and justice; and ethical/legal issues in large scale sequencing and GWAS.




Dr. Peter W.B. Phillips, an international political economist, is Professor of Public Policy in the Johnson Shoyama Graduate School of Public Policy at the the University of Saskatchewan. He undertakes research on governing transformative innovation, including biotechnology regulation and policy, innovation systems, intellectual property, supply chain management and trade policy. He is co-PI of the $2.8 million Genome Canada project entitled Translating Knowledge in Health Systems (2006-10) and co-lead and PI of a $5.4 million Genome Canada project entitled Value Generation through Genomics and GE3LS (VALGEN) which will run 2009-13. His latest book—Governing Transformative Technological Innovation: Who’s in charge?—was published by Edward Elgar in June 2007.




Laura Lyman Rodriguez, Ph.D., is the Acting Director for the Office of Policy, Communication, and
Education and the Senior Advisor to the Director for Research Policy at the National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH). Dr. Rodriguez works to develop and implement policy for research initiatives at the NHGRI, as well as trans-NIH programs. She is particularly interested in the policy and ethics questions related to the inclusion of human research participants in genomics and genetics research. Dr. Rodriguez is also interested in the policy and organizational issues associated with the development and establishment of strategic partnerships. .Among other activities, Dr. Rodriguez provided leadership for many of the policy development activities pertaining to the Genetic Association Information Network (GAIN) as well as the development and implementation of the trans-NIH Policy for Data Sharing in Genome-Wide Association Studies (GWAS).
Dr. Rodriguez received her bachelor of science with honors in biology from Washington and Lee University in Virginia and earned a doctorate in cell biology from Baylor College of Medicine in Texas.




Mark A. Rothstein holds the Herbert F. Boehl Chair of Law and Medicine and is the Founding Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
He received his B.A. from the University of Pittsburgh and his J.D. from Georgetown University. Professor Rothstein has concentrated his research on bioethics, genetics, health privacy, public health law, and employment law. From 1999-2008, he served as Chair of the Subcommittee on Privacy and Confidentiality of the National Committee on Vital and Health Statistics, the statutory advisory committee to the Secretary of Health and Human Services on health information policy. He is past president of the American Society of Law, Medicine and Ethics.
He is the author or editor of 19 books and nearly 200 book chapters and articles in leading journals of bioethics, law, medicine, and public health.




Dr. Stephen Scherer, PhD, FRSC, is Director of The Centre for Applied Genomics at The Hospital for Sick Children and Professor at the University of Toronto. 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 spectrum disorder. He collaborated with Craig Venter's team to decode human chromosome 7 and to generate the first genome sequence of an individual. Over 250 peer-reviewed papers document his work (cited >15,000 times). Dr. Scherer has won numerous honors including the 2004 Steacie Prize in the Natural Sciences, an International Howard Hughes Medical Institute Scholarship, and the $5M- 2008 Premier Summit Award for Medical Research. In 2001 he accepted an Honorary Doctorate from the University of Windsor and in 2007 he was awarded the University of Waterloo's first Science Distinguished Alumni Award. He sits on the Scientific Advisory Board of Combimatrix Diagnostics and Autism Speaks, and he is on the Board of Trustees of Genome Canada and the Human Genome Organization (HUGO). He holds the GlaxoSmithKline-Canadian Institutes of Health Research Endowed Chair in Genetics and Genomics and is a Scholar of the Canadian Institute for Advanced Research.

Dr. Stephen Scherer's Speaker Abstract: Structural and copy number variations in personalized genomics: will they explain the missing heritability in genetic disease studies?




Sharon Terry, MA, is President and CEO of the Genetic Alliance, a network transforming health by promoting an environment of openness centered on the health of individuals, families and communities. She is the founding Executive Director of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). Following the diagnosis of their two children with pseudoxanthoma elasticum (PXE) in 1994, Sharon, a former college chaplain, and her husband, Patrick, founded and built a dynamic organization that supports and conducts research and educate the public and providers.
Ms. Terry is a co-founder of the Genetic Alliance Biobank. It is a centralized biological and data repository catalyzing translational genomic research on genetic diseases. The BioBank works to develop novel diagnostics and therapeutics to better understand and treat these diseases. She is at the forefront of consumer participation in genetics research, services and policy and serves as a member of many of the major governmental advisory.
Terry is committed to bringing together diverse stakeholders that create novel partnerships in advocacy; integrating individual, family, and community perspectives to improve health systems; and revolutionizing access to information to enable translation of research into services and individualized decision making.





Helen Wallace is Director of GeneWatch UK, a not-for-profit organisation which aims to ensure that genetics is used in the public interest. Her degree is in phsyics and her PhD in applied mathematics. Her scientific background is in the modelling of complex environmental systems. In 1994, she went to work for the Greenpeace UK science unit, where she worked mainly on marine pollution issues and radioactive waste. She joined GeneWatch as Deputy Director in 2001, with overall responsibility for work on human genetics. She has since published journal papers, book chapters and briefings on the scientific and social issues human genetic testing and genetic databases. Her work is regularly cited in th UK parliament and in the media.

Helen Wallace's Speaker Abstract: Commercial influences and the story of personalised genomics