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Conference Schedule (rev. 2/28/08)
Times and Sessions Subject to Change
The international conference officially runs from 1 p.m. Thursday, May 1, through 5 p.m. Saturday, May 3. Online registration is open now.
All conference activities will be hosted at the conference hotel, the Renaissance, in downtown Cleveland. Attendees should reserve their rooms as soon as possible to obtain the special $149 rate. Visit "hotel information” for all the details.
Pre-conference educational workshop:
(The Workshop is FREE but advance registration required.)
Grantsmanship: From Preproposal to Notice of Grant Award -- and Beyond
Thursday morning May 1 from 9am to 11:30
(Regular conference activities begin at 1pm)
This informal interactive session will focus on the ins and outs of writing a successful ELSI grant application --from the preproposal consultation to the issuance of the Notice of Grant Award. Special attention will be given to the importance of ensuring the participation of diverse communities in the planning and implementation of ELSI research.
General Schedule
Translating Ethical, Legal and Social Implications of Genomic Research
International conference, May 1-3, 2008, Renaissance Hotel,
downtown Cleveland, Ohio
Schedule (Click here to view as pdf)
(Rev. 2/28; times and sessions subject to change)
Thursday, May 1
1-2 p.m. Opening Session
"The Past as Prologue, Revisited: ELSI from 1990-2008"
Patricia King, J.D ., Carmack Waterhouse Professor of Law, Medicine, Ethics, and Public Policy , Georgetown University
Professor King's expertise is in the study of law, medicine, ethics and public policy. She is also an adjunct professor in the Department of Health Policy and Management, School of Hygiene and Public Health at Johns Hopkins University. She is the co-author of Cases and Materials on Law, Science and Medicine . She offers a seminar in Bioethics and the Law. She is a member of the American Law Institute and the Institute of Medicine and a Fellow of the Hastings Center. Her work in the field of bioethics has included service on the HEW-Advisory Recombinant DNA Advisory Committee, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, and the Ethics, Legal and Social Issues Working Group of the Human Genome Project. She is a fellow of the Harvard Corporation and a member of the Board of Trustees of Wheaton College.
2:30-4 p.m. Concurrent Sessions
Research Track: Intellectual Property and Biological Inventions
- Panel: Intellectual Property, Genomics and Innovation
Authors: Cook-Deegan, R.; Chandrasekharan, S.; Arti, R.
- Patents and the New Zealand Genetic Services and Biotechnology Sectors
Author: Green, A.
- Synthetic Biology
Author: Mukhopadhyay, A.
- Technology Transfer Offices—The Reason to Repeal or Repair Bayh-Dole
Author: Greenbaum, D.
Clinical Track: Pediatric Genetic Testing
- PANEL: Genetic Testing and Research in Children: Ethical and Policy Implications
Authors: Wilfond, B.; Tarini, B.; Goldenberg, A.; Botkin, J.
Societal Track: Genomic Research in Native Communities
- PANEL: Working with Native Communities
Authors: Au, S.; Brilliant, M.; Hasegawa; Wood, T.
- Ethical and Cultural Implications of Specimen Banking Among Alaska Native People: A Framework for Analysis from Two Pilot Focus Groups
Authors: Dillard, D.; Brown, J.; Etzel, R.
4-4:30 p.m. Break refreshments
4:30-6:30 p.m. Concurrent Sessions
Research Track: Genome-Wide Association Studies
- PANEL: Developing Conceptual Frameworks for Translational ELSI Research in Biobanking and GWAS
Authors: McGuire, A.; Burke, W.; Wright Clayton, E.; Beskow, L.; Koenig, B
- In the Laboratory with Genome Wide Association Studies: Conceiving Populations
Author: Ossorio, P.
Clinical Track: Genetic Risk Assessment for Alzheimer Disease
- PANEL: The Challenges of Providing Genetic Risk Information for Common, Complex Disease: Lessons Learned from the REVEAL Study
Authors: Green, R.C.; Roberts, J. S.; Whitehouse, P.; Cook-Deegan, R.
- A Qualitative Exploration of Reactions to Risk Assessment in a Randomized Tial of Genetic Counseling in Alzheimer's Disease
Author: Whitehouse, P.
Genetic Testing for Dementia Risk and the Problem of Rational Suicide
Author: Davis, D.
Societal Track: Lessons from History and Lessons for History
- PANEL: Lessons from History for a Genomic Future
Authors: Schneider, W.; Stern, A.; Mehlman, M.
- Thomas Jefferson's DNA: Evolving Standards of Consent for Genetic Research
Author: Lombardo, P.
- Double Helix, Double Standards: Private Matters and Public People
Author: Brown, T.
- Tales from the Crypt: Scientific, Ethical, and Legal Considerations for Biohistorical Analysis of Deceased Historical Figures
Authors: Andrews, L; Paradise, J.
6:30-7:30 p.m. Networking Reception in Exhibit Hall with poster presentations
Friday, May 2
7:30 a.m.-5 p.m.
Poster presentations displayed in Exhibit Hall
7:30-8 a.m. Continental Breakfast
8-10 a.m.
"Scanning the Whole Genome Horizon: Where Genomics Is Going Next"
Panelists include: E. Liu, M. Olson and C. Rotimi
10-10:30 a.m. Break refreshments
10:15 a.m - 12:30 p.m. New Issues for a Settled Practice: Newborn Screening and the Ethics of Public Health Genetics
Public Health Follow up of abnormal newborn screening results
Authors: Riley, C.; Watts, C.; Burke, W.
Astigmatism in the Public Eye: An Analysis of Gaps in The Media Coverage of the Ethical and Social Issues Regarding Newborn Genetic Screening
Authors: Schlesinger, M.; Grob, R
Qualitative Perspectives on Quality and Quantity in Newborn Screening
Author: Grob, R.
Expansion of Newborn Screening in Israel: Routinization of a New Technology, Knowledge Construction, and Public Understanding
Author: Zuckerman, S.
Shared Decision-Making: A Paradigm Shift for Newborn Screening Programs
Author: Lewis, M.
10:30-Noon Concurrent sessions
Research Track: Biobanking and Health Registry Research
- Biobanks and Genomic Research: Empirical Evidence and Challenges Ahead
Authors: Boggio, A.; Elger, B.; Ganguli-Mitra, A.; Biller-Andorno, N.; Mauron, A.; Capron, A.
- Mapping the Language of Research—Biobanks and Health Registries
Authors: Helge Solbakk, J.; Holm, S.; Hofmann, B.
- Informed Consent Requirements for Biobanking Research: From the Maze of the Current Regulations to the Construction of a Unified Model of Informed Consent to Collect and Store Human Biomaterials for Research. The Local Experience of the Italian Biobank
Author: Salvaterra, E.
- Biobanks, IP and Deliberative Democracy: Generating IP Policy Concerns from Public Deliberation.
Authors: Hartell, D.
Clinical Track: Familial Issues in Genetic Testing
- Making Choices: The Family Experience of Genetic Testing/Prenatal Screening for Down syndrome: More Than a Simple Blood Test and a Picture of the Baby
Author: Van Riper, M.
- Prenatal Genetic Therapy: Making Children Healthy vs. Making Healthy Children
Authors: Asch, A.; Wasserman, D.
- Parent-Child Communication about Hereditary Disease Risks: ELSI Translations From Cancer to Genomic Medicine
Authors: Tercyak, K., Peshkin, B., Peterson, S., Patenaude, A.
- Managing Information in Families with Children who have Genetic Conditions
Authors: Gallo, A.; Knafl, K.; Angst, D.
- Storm clouds ahead: The impact of a genetic diagnosis on Mexican-immigrant siblings suffering neurodegenerative disease
Authors: Browner, C.; Preloran, M.
Societal Track: Genetics, Race, and Ancestry
- PANEL: Genetic Testing, Race, and Community Identity
Authors: Davis, D.; Fullerton, M.; Jeungst, E.; Sharp, R.; Yu, Joon-Ho; Zuckerman, S.
Genetic Inference of Ancestry: Challenges and Solutions
Author: Mountain, J.
1:00 - 4:30p.m. Law-Med Center at CWRU Newborn Screening Symposium:
Separate registration is required, ask at ELSI Registration - limited space available.
Symposium and speaker info available here.
Agenda info available here.
Info on CLE credit available here.
Following the Law-Med Center at CWRU Newborn Screening Symposium at 4:30pm will be the panel: Critical ELSI Issues of Expanded Newborn Screening
Authors: Bailey, D.; Skinner, D.; Davis A.; Howell, R.; Powell, C.
1:30-3 p.m. Concurrent Sessions Research Track: Public Involvement in Genomic Research Planning
- PANEL: Deliberative Democracy and Biobanks: Involving the Public in Policy Formation
Authors: Koenig, B.; Burgess, M.; Walmsley, H.; O'Doherty, K.; Hudson, K.
Clinical Track: Genomics and Health Disparities
- PANEL: Will Genomic Medicine Exacerbate Health Disparities? Investigating Access to and Utilization of Available Genetic Tests Among Underserved Populations
Authors: Shin, P.; Shields, A.; Burke, W.; Levy, D.
- Genomics, Ethics, and Health Disparities: The Importance of Community Voices in Addressing Equity Issues Related to Genomic Science and Policy Development
Authors: Goldenberg, A.; Platt Garcia, J.
Societal Track: Behavioral Genetics and the Media
- PANEL: Behavioral Genetics in the Media
Authors: Geller, G.; Condit, C.; Conrad, P.; Phelan, J.
- Ethical and Social Aspects of Behavioural Genomics: What are the Opinions of Life Scientists?
Author: Higashijima, J.
3-3:30 p.m. Break refreshments
3:30-5 p.m. Concurrent Sessions
Research Track: Secondary Research Uses of Stored Genetic Materials
- The Use of Residual Newborn Screening Bloodspots for Genetic Research: Ethics at the Intersection between Biobanks and Public Health
Author: Goldenberg, A.
- Permissible Uses of Retained Newborn Screening Blood Samples: Views of Mothers of Newborns
Author: Lewis, M.
- Effect of Educational Consent Video on Genetic Research Participants' Preferences for Future Use of DNA
Author: Lewis, S.
- Consent for Future Use of Retained DNA in Behavioral Research: Purpose of Empirical Data
Author: Coors, M.; Mikulich-Gilbertson, S.; Raymond, K.; Crowley, T.
Clinical Track: Pharmacogenomics in Theory and Practice
- Regulating Pharmacogenetic Tests
Authors: Javitt, G.; Hudson, K.
- News Coverage of Pharmacogenomics and Genetically-based Personalized Medicine for Stigmatized Versus Non-stigmatized Conditions
Authors: Feldman, N.; Kuppin, S.; Phelan, J.
- The Issues of Pharmacogenetics Implementation in Quebec, Canada
Author: Dubois, A.
- A Comparison of Claims and Evidence: CYP450 genotyping and SSRI Prescribing
Authors: Katsanis, S.; Javitt, G.; Scott, J.; Hudson, K.
- The Place of Race in Patenting and Drug Development
Author: Kahn, J.
- Race, Genes and Justice: Interpreting Population Differences in Pharmacogenomics
Author: Lee, S.
Societal Track: Personal Genomics and Personal Identity
- Direct-to-Consumer Genetic Testing: An Overview of the European Regulatory Framework
Author: Borry, P.
- Challenges of Direct-to-Consumer Genomics
Author: Greely, H.
- Nutrigenomics and the Promise of Prevention: Representations and Realities
Author: Caulfield, T.
- Reconceptualizing the Individual: Implications of Metagenomics
Author: Huss, J.
- Genetic Perspectives on Identity and Identification
Author: Nordgren, A.
4:30 - 6:00 p.m. Whitehall Room
This panel follows the Law-Med Center at CWRU Newborn Screening Symposium
PANEL: Critical ELSI Issues of Expanded Newborn Screening
Authors: Bailey, D.; Skinner, D.; Davis A.; Howell, R.; Powell, C.
8 – 10 p.m. Severance Room
“Art and Science Share the Stage: Ferocious Beauty: Genome”
(Advance on-site registration required***)
Choreographer Liz Lerman discusses and shows excerpts from her highly acclaimed performance project, Ferocious Beauty: Genome. From folk tales to scientists as choreographers, the piece takes an unconventional look at the nature of the genome and its impact.
Lerman asks tough questions about the ethical, legal and social implications of genomics: why do we want to live so long? If we have the capacity to select what we want in our genes, what will happen to diversity? If perfection is possible, who decides what it is?
Physician-geneticist Francis Collins, director of the National Human Genome Research Institute, says of Ferocious Beauty: Genome, “It draws you in, it's an experience. Science is seen by many people as impenetrable because it's full of jargon and it's hard to understand what people are talking about. This is so accessible, yet it's so mysterious, in a way that science can be as well.”
***Limited reservations available for this presentation. ELSI participants may register as space permits. Sign up at the registration desk at the Renaissance Hotel during the conference. The event is free to ELSI participants.***
Saturday, May 3
7:30-8 a.m. Continental breakfast
8 a.m.-3 p.m. Poster presentations exhibit
8-9:30 a.m. Concurrent Sessions
Research Track: Reproductive Genetics and Gene Transfer Research
- Mapping the quest for PGD in Norway
Author: Skavoll, B.; Solbakk, J.H.; Hofmann, B; Holm, S.
- The New Zealand Bioethics Council Explores the Cultural, Ethical and Spiritual Aspects of Pre-Birth Testing
Author: Thomas, C.
- Describing Benefit in Consent Forms: Lessons from Gene Transfer Research
Author: King, N.
- Perceptions of Benefit in Gene Transfer Research: Disease Context, Subject Characteristics, and Decision-making
Authors: Henderson, G.; Davis, A.
- Protecting Human Subjects in Genetic Enhancement Research
Author: Mehlman, M.
Clinical: International Perspectives on Genomics Policy Development
- Formulating and Implementing Public Policy Related to Translational Genome Research: Iran and the United States
Authors: Jillson, I.; Ekhitiari, H.
- History and current status of ELSI and communication activities conducted by the Japanese genome research projects
Author: Kato, K.
- PredictER: Indiana University's Experience in Translating Predictive Health Ethics Research into Practice
Author: Meslin, E.
- From Gene Discovery to Health Policy: An ELSI* Success Story in Atlantic Canada
Author: Pullman, D.
Societal Track: The Two Cultures Revisited: Science and Ethics in Dialogue
- Geneticists' Views of the Societal and Ethical Implications of Research
Authors: McCormick, J.; Boyce, A.; Cho, M.
- Beyond the Nature-Nurture Debate: Bioethics and the Integration of Knowledges
Authors: Boyce, A.; McCormick, J.; Cho, M.
- Integrating ELSI into the scientific process: the PERF approach
Author: Dressler, L.
- Defining Ambiguities: Towards a Genealogy of Gene-Environment Interaction
Author: Shostak, S.
9:30-10 a.m. Break refreshments
10 a.m.-Noon Concurrent Sessions
Research Track: Reporting Research Findings in Human Genetic Research
- Achieving Consensus about the Challenges in Human Genetic Research (I and II)
Author: Wiesner, G
- Disclosure and Confidentiality in Clinico-Genomic Research: Patients' Attitudes and Perspectives Towards Individual Donor Feedback
Authors: Peterson, I.; Kollek, R
- Disclosing Individual Genetic Results to Research Participants
Author: Ravitsky, V.
- Managing Incidental Findings in Human Subjects Research: From Imaging to Genomics
Author: Wolf, S.
- Reconceptualizing and Managing Incidental Findings of Genetic Research
Author: Parker, L.
Clinical Track: Integrating Genomic Tools into Clinical Practice
- The translational cycle in genomic research
Authors: Kuszler, P.; Burke, W.; Starks, H.
- The standard of care for genetic tests: what role do clinical practice guidelines play?
Authors: Laberge, A.; Kuszler, P.; Starks, H.; Burke, W.
- Translating Meaning: Report on an ELSI Methodology
Authors: Brunger, F.; Darmonkov, V.; King, L.; Manual, A.
- What Have We Learned about Cancer Genetics? Findings and Retrospective Ruminations from the Cancer Genetics Studies Consortium
Author: Press, N.
- Distress and Burnout Among Genetic Service Providers: Causes and Potential Manpower Consequences
Author: Bernhardt, B.
- Found In Translation: Religion and Spirituality in Genetic Counseling
Author: Fanning, J.
Societal Track: Group Interests and Genomic Research
- A Theory of Collective Autonomy: Can it Ground "Community Consent"?
Author: Davis, D.
- Genome Justice: Genetics and Group Rights
Author: McGregor, J.
- Groups and Rights in Genomics Research: A Conceptual Approach
Author: Kanellopoulou, N.
1-2:30 p.m. Concurrent Sessions
Research Track: The Role of Racial Categories in Genomic Research
- PANEL: ELSI Approaches to Race and Genetic Research: Talking with Researchers, Engaging Policy-makers and Examining the Public Impact
Authors: Lee, S.; Mohahan, K.; Sankar, P.; Cho, M.
- Genetic Constructions of Racial Differences in News Media: 1985-2006
Author: Phelan, J.
Clinical Track: Public Perceptions of and Involvement in Genetics and Genomics
- Public Health Genomics (PHG) and Public Participation
Authors: Avard, D.; Bucci, L.; Burgess, M.; Kaye, J.; Heeney, C.; Farmer, Y.; Cambon-Thomsen, A.
- Visions of the Citizen in Population Research
Author: Arnason, V.
- Perceptions of Population-Based Genetics Research: Views of Potential Participants and the General Public
Authors: Somkin, C.; Altschuler, A.; Brown, E.; Rowell, S.; Schaefer, C.
- Roles of Advocacy Groups, Researchers and Parents in Genetic Research on Complex Traits: The Example of Autism
Author: Tabor, H.
- Lay Genetic Explanations for Type II Diabetes and Alcoholism: Public Health Implications
Author: Jayaratne, T.
- The Genomics Policy Process: A Model For Partnering Citizens, Experts and Policy Makers
Author: Fowler, G.; Garland, M; Allison, K.C.
Societal Track: Genomics and the Law
- Genome-Wide Scans: ELSI Practices for the $1000 Genome
Author: Robertson, J.
- Judging Genes: Implications of the Second Generation of Genetic Tests in the Courtroom
Author: Hoffman, D.
- Genetic Testing and Discrimination: A Comparison of United States Civilian and Military Law and Policy
Author: Baruch, S.; Hudson, K.
- Genetic Testing in the Workplace: A Survey of Occupational Medicine Physicians
Authors: Brandt-Rauf, P.
2:30-3 p.m. Break refreshments
3-5 p.m. Closing Session
“From Where I Stand: Observations on ELSI Research Through the Lens of This Conference”
Panelists include: S. Brownlee, P. Shepard and P. Williams
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