Conference Schedule

Conference Schedule

 

CONFERENCE SCHEDULE
Download Schedule

 

 

Monday, June 5, 2017

7:30 am
Registration & Refreshments
Location: Academic Entrance – UConn

8:15 am
Welcome & Announcements
Location: Academic Rotunda – UConn

8:35 am
Keynote Address: Innovating Ourselves for the Era of Precision Health
Stephanie Devaney, Deputy Director, NIH All of Us  (Precision Medicine Initiative) Program
Location: Academic Rotunda – UConn

9:25 am
Plenary Talk: All of Us: What are the Ethical, Legal and Social Implications for All of Us?
Pearl O’Rourke
, Harvard Medical School
Location: Academic Rotunda – UConn

10:15 am
Break

10:45 am
Concurrent Sessions A1-A4

A1 – Panel The Double Helix in Law and the Courts
Maya Sabatello, Columbia University;
Mark Rothstein, University of Louisville School of Medicine;
Paul Appelbaum, Columbia University Medical Center;
Leslie Francis, University of Utah
Auditorium – JAXGM
A2 – Panel Advancing ELSI Research in a Learning Health Care System
Daniel F. Davis, Geisinger Health System;
Jennifer K. Wagner, Geisinger Health System;
Michelle Meyer, Geisinger Health System;
Adam Buchanan, Geisinger Health System
Massey Auditorium – UConn

 

A3 – Paper Session Alaska Native Community-Driven Genomic Testing and Research
Vanessa Hiratsuka, Southcentral Foundation
Cree Leukoencephalopathy and Cree Encephalitis Carrier Screening Program: Lessons Learned from a Community-Based Carrier Screening Program in a First Nations Community
Jessica Le Clerc-Blain, CHU Sainte-Justine Research Center
Identifying Factors for Ethically and Culturally Appropriate Genetic Research in Native Communities
Nanibaa’ Garrison, Seattle Children’s Hospital
Exploring the Implications of Genomics in American Indian and Alaska Native Communities
Paul Spicer, University of Oklahoma
Academic Rotunda – UConn
A4 – Paper Session Embedded ELSI research: A Randomized Controlled Experiment to Assess the Impact of ELSI Research on Genomic Studies
Joel Pacyna, Mayo Clinic
Embedded Genomics:  Promises and Pitfalls
Gail Henderson, UNC-Chapel Hill
The Overselling of Clinical Genome and Exome Sequencing (CGES):  Maybe It’s Just Another Test
Barbara Bernhardt, University of Pennsylvania
What are We Learning About the Experiences of Women who Receive Positive Results from Prenatal Genome-wide Testing?
Allison Werner-Lin, University of Pennsylvania
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

 

 

12:15 pm
Lunch/Trainee Table

1:30 pm                                Concurrent Sessions B1-B4

B1 – Panel Developing the Law and Policy Universe to Meet the Challenges of Genomics
Susan Wolf, University of Minnesota;
Ellen Wright Clayton, Vanderbilt University;
Amy McGuire, Baylor College of Medicine;
Gary Marchant, Arizona State University College of Law
Massey Auditorium – UConn
B2 – Panel Categorizing Genetic Conditions in the Era of Reproductive Genome Sequencing: What Lines, If Any, Should be Drawn for Expanded Genomic Testing?
Benjamin Wilfond, Seattle Children’s Research Institute;
Stephanie Kraft, Seattle Children’s Research Institute;
Jeffrey Botkin, University of Utah;
David Wasserman, National Institutes of Health
Auditorium – JAXGM
B3 – Paper Session Refuting the Right Not to Know Genetic Information about Oneself
Benjamin Berkman, NIH Department of Bioethics/NHGRI
Attitudes Towards Return of Results Among Participants in the Jackson and Framingham Heart Studies
Steven Joffe, University of Pennsylvania Perelman School of Medicine
Evolving Relationships and Evolving Duties: Research and Lab Liability for the Return of Genetic Testing Results
Teneille Brown, University of Utah
Genomic Empowerment: Case Studies of How Patient Control of Genomic Data can Transform Research, Translation and Precision Medicine
Holly Tabor, Stanford University
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

 

B4 – Paper Session Stigma and Down Syndrome: A Cross-Cultural Exploration of the Family Experience
Marcia Van Riper, University of North Carolina at Chapel Hill
Grappling with Genetics: Patient Safety Implications of Increasing Genetic Testing in Cancer Care
Stephanie Fullerton, University of Washington
Disclosing Genetic and Neuroimaging Risk Information in the New Era of Alzheimer’s Prevention Trials: Practical and Ethical Challenges and Opportunities
Scott Roberts,  University of Michigan School of Public Health
Whose Risk? A Comparison of Common and Uncommon Inheritance, Risk, and Benefits in Genomic Research
Joseph Yracheta, Missouri Breaks Research Industries, Inc.
Academic Rotunda – UConn

 

3:00 pm

Break

3:30 pm                       Concurrent Sessions C1-C4

C1 – Panel An “Omics” Update: Effects of Next-Generation Sequencing on Genetic Testing Law & Policy
Kayte Spector-Bagdady, University of Michigan Medical School;
Anya Prince, University of North Carolina – Chapel Hill;
Robert Cook-Deegan, Arizona State University;
Jim Evans, University of North Carolina – Chapel Hill
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

C2 – Workshop Risks, Harms, and Legal Protections in Large‐Scale Gene‐Environment Interaction Studies
Kate Brelsford, Duke Clinical Research Institute
Catherine Hammack, Duke Clinical Research Institute;
Leslie E. Wolf, Georgia State University College of Law;
Erin C. Fuse Brown, Georgia State University College of Law
Holt Conference Room – JAX GM
C3 – Workshop Tools for Bioethics Engagement: New Approaches and Materials for the Classroom and Beyond
Dana Waring, Harvard Medical School;
Maurice Godfrey, University of Nebraska Medical Center;
Charles Wray, The Jackson Laboratory
Auditorium – JAXGM
C4 – Paper Session Potential Negatives of Negative Results: Disclosing Normal Genomic Screening Results to People Who May be at Risk for Harm if They Misunderstand Their Meaning
Rita Butterfield, UNC
Should Researchers Offer Genomic Research Results to a Participant’s Family, Including After the Participant’s Death? A Cultural Analysis of an ELSI Problem and Response.
Deborah Gordon, University of California, San Francisco
The Impact of Raw DNA Availability and Corresponding Online Interpretation Services: A Mixed Methods Study
Catharine Wang, Boston University School of Public Health
Testing Positive and Testing Negative for a Genetic Predisposition Both Have Detrimental Effects
Woo-Kyoung Ahn, Yale University
Academic Rotunda – UConn

 

 

 

5:00 pm
Break

5:30 -7:30 pm
Poster Session 1
Reception/Poster Walks
Location: Helix Cafe – JAXGM

 

Tuesday, June 6, 2017

7:30 am
Registration & Refreshments
Location: Academic Entrance – UConn

8:15 am
Welcome & Announcements
Location: Academic Rotunda – UConn

8:30 am
Plenary Talk: Ethics & Omics: The Return of Results in the Clinic
James Evans
, University of North Carolina
Location: Academic Rotunda – UConn

10:00 am
Break

10:30 am                              Concurrent Sessions D1-D5

D1 – Panel Ethical and Social Implications of Clinical Implementation of cffDNA Prenatal Screening in North America: a Comparison Between the United States and Canada.
Anne-Marie Laberge, CHU Sainte-Justine;
Vardit Ravitsky, Université de Montréal;
Subhashina Chadrasekharan, Duke Global Health Institute;
Patricia Deverka, American Institutes for Research
Auditorium – JAXGM
D2 – Panel Ethical Challenges in the Oversight and Governance of PMI: IRB perspective
David Mangus, Stanford University Center for Biomedical Ethics;
Ysabel Duron, Latinas Contra Cancer
Massey Auditorium – UConn
D3 – Workshop Should Every Newborn be Sequenced at Birth?  Crafting Policies to Guide Genomic Practice
Barbara Koenig, University of California, San Francisco;
Josephine Johnston, The Hastings Center;
Jeffrey Botkin, University of Utah School of Medicine;
Eric Juengst, University of North Carolina – Chapel Hill;
Aaron Goldenberg, Case Western Reserve University;
Holt Conference Room – JAX GM
D4 – Paper Session Narratives of Gene Patenting
Jorge Contreras, University of Utah
Gene-Editing Technologies and the Self: How Altering DNA Might Rewrite Disability Narratives
Shawna Benston, Columbia University  
Using Patents to Limit Controversial Genomic Technologies: The CRISPR Case Study
Christi Guerrini, Baylor College of Medicine
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

D5 – Paper Session Inherited Disease Screening Through Targeted Genetic Testing for Adopted Individuals
Thomas May, University of California San Francisco
Future Uses of Genetic Data in the Electronic Health Record:  A “Consent to Governance” Approach
Peter Schwartz, Indiana University School of Medicine
Using Patient Experiences in Provider Education to Explore ELSI Issues Through Patient-Centered Communication
Emily Edelman, The Jackson Laboratory
The Case for Adding a “C” to ELSI: How Communication Science Can Amplify the Influence of Genomic Information on Behavior Change and Improve Population Health
Megan Lewis, Research Triangle Institute
Academic Rotunda – UConn

 

12:00 pm
Working Lunch/Lecture

Plenary Talk: Genes, Ancestry and Identity
Alondra Nelson
, Professor, Dean of Social Science, Columbia University
Location: Academic Rotunda – UConn

 

1:30 pm                                Concurrent Sessions E1-E4

E1 – Panel Data Ownership: Solution or Problem?
John Rumbold, Kingston University London;
Jorge L. Contreras, University of Utah;
Mark A. Hall, Wake Forest University;
Auditorium – JAXGM
E2 – Panel Reporting Dilemmas in Pediatric Genomics
Kyle Brothers, University of Louisville;
Allison Werner-Lin, University of Pennsylvania;
Alanaa Kalchak Rahm, Geisinger Health System;
Ingrid Holm, Boston Children’s Hospital
Massey Auditorium – UConn
E3 – Paper Session European Union’s Regulation of Genetic Data
Heidi Beate Bentzen, University of Oslo
“Medical Research: Take Part, be Informed, Make a Difference!”: Including Patients in UK Clinical Waiting Rooms in Biobanking Policy Deliberations.
Teresa Finlay, HeLEX, University of Oxford
The Puzzle of “mHealth” ELSI: Fitting Pieces to the Canadian Normative Framework of Consent
Amy Pack, Centre of Genomics and Policy
Creating a Trustworthy Research Enterprise: Perspectives of Diverse Patients on Next Generation Biobanking
Sandra Lee, Stanford University
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

E4 – Paper Session Bioethics at the Boundaries of our Genome: Genetic Engineering and the Human Microbiome
Nicolae Morar, University of Oregon
Scientific Social Responsibility in the Age of DIY Biology
Pamela Sankar, University of Pennsylvania
Payer Coverage Policies for Multigene Tests: Results from a New Systematic Registry
Kathryn Phillips, University of California San Francisco
Clinician Attitudes Toward Use of APOL1 Genetic Testing in Kidney Transplantation
Wylie Burke, University of Washington
Academic Rotunda – UConn

 

3:00 pm
Break

3:30 pm                Concurrent Sessions F1-F4

F1 – Panel Legal and Regulatory Issues Arising under the Human Microbiome Project

Diane Hoffman, University of Maryland Francis King Carey School of Law;

Colleen Kelly, Brown Alpert Medical School;

Francis B. Palumbo, University of Maryland School of Pharmacy;

Auditorium – JAXGM
F2 – Panel Anticipatory ELSI, Anticipating Disease
Angie Boyce, Johns Hopkins University Berman Institute of Bioethics;
Eric Juengst, University of North Carolina – Chapel Hill;
Martine Lappé, Columbia University;
Jeffrey Kahn, Johns Hopkins University Berman Institute of Bioethics
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

 

 

F3 – Workshop The Evolution of Community Engagement in Native Communities
Justin Reedy, University of Oklahoma;
Justin Lund, University of Oklahoma;
Scott Ketchum, University of Oklahoma;
Joseph Yracheta, Missouri Breaks Industries Research, Inc.
Massey Auditorium – UConn
F4 – Paper Session Dynamic Consent – Protecting Privacy and Enabling Communication
Jane Kaye, University of Oxford
Ethical Challenges in Obtaining Informed Consent in a Genomic Study on Rheumatic Heart Disease in Cape Town, South Africa
Francis Masiye, University of Cape Town  
The Public’s Moral Concerns with Donating to a Biobank and Their Consent Policy Preferences: A Mixed Methods Study
Raymond De Vries, University of Michigan
Hashtag Who’s Missing? Lessons for Participant-Centric and Pediatric Genomic Databases
Angela Villanueva, Baylor College of Medicine
Academic Rotunda – UConn

 

5:00 pm
Break

5:30 – 7:30 pm
Poster Session 2
Reception/Poster Walks
Location: Helix Cafe – JAXGM

 

Wednesday, June 7, 2017

 

7:30 am
Registration & Refreshments
Location: Academic Entrance – UConn

8:15 am
Welcome & Announcements
Location: Academic Rotunda – UConn

8:30 am
Plenary Talk: Reinventing ELSI
Wylie Burke
, University of Washington
Location: Academic Rotunda – UConn

10:00 am
Break

10:30 am                              Concurrent Sessions G1-G4

G1 – Panel The Meaning of Race: Examining the Role of Race and Ethnicity in Genomic Research and Medicine
Vence L. Bonham, National Human Genome Research Institute;
Michael Hahn, National Human Genome Research Institute;
Wendy Roth, University of British Columbia;
Jacqueline Taylor, Yale School of Nursing;”
Elizabeth Phillips, University of Maryland School of Medicine;
Genevieve L. Wojcik, Stanford University
Massey Auditorium – UConn
G2 – Panel Ethical Issues in Large Scale Research: Cross-cutting Issues in Exploring Genetic Risk in Adult and Pediatric Populations
Holly Peay, RTI International;
Cynthia Powell, University of North Carolina – Chapel Hill;
Gail Henderson, University of North Carolina – Chapel Hill
Auditorium – JAXGM
G3 – Paper Session Asian Americans, Genome Sequencing, and Precision Medicine
Joon-Ho Yu, University of Washington
ELSI Issues in Genomics and the PMI
Mark Rothstein, University of Louisville
Recruiting a Just, Diverse Cohort to the Precision Medicine Initiative: Should We Pay?
Carolyn Neuhaus, NYU School of Medicine;
Lisa Kerns, NYU School of Medicine
The New Public Health Genomics: Implications of “Precision Prevention”
Karen Meagher, University of North Carolina at Chapel Hill
Academic Rotunda – UConn

 

G4 – Paper Session Third-party Tools for Consumer-driven Interpretation of Personal Genetic Data: Sources of Meaning-making for Citizen Scientists
Sarah Nelson, University of Washington
What Does it Mean to Own the Data in a Medical Information Commons?
Amy McGuire, Baylor College of Medicine
Systems Medicine and the Potential Role of Genetics in Future Medicine
Tobias Fischer, University Medicine Greifswald
Reflections on “If You Build it, They Will Come: Unintended Future Uses of Organized Health Data Collections”
Kieran O’Doherty, University of Guelph
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

 

12:00 pm
Lunch/ Trainee Tables

1:15 pm                                Concurrent Sessions H1-H4

H1 – Panel Biobanking 2.0: Re-envisioning Relationships and Engaging New Ethical Challenges
Kyle Brothers, University of Louisville;
Aaron Goldenberg, Case Western Reserve University;
Kieran O’Doherty, University of Guelph;
Richard Sharp, Mayo Clinic
Auditorium – JAXGM
H2 – Panel The Importance of Choice About Secondary Results from Genomic Sequencing: Opportunities and Challenges for Parents and Prospective Parents
Danton Char, Stanford University;
Josephine Johnston, The Hastings Center;
Holly K. Tabor, Stanford University;
Barbara Biesecker, National Human Genome Research Institute
Massey Auditorium – UConn

 

H3 – Paper Session Is Real-Time ELSI Realistic? An Ongoing Case Study
John Conley, University of North Carolina-Chapel Hill
Setting Priorities for Genomic Research: Cost-Effectiveness and Distributive Fairness
Govind Persad, Johns Hopkins University
Using a Public Health Framework to Understand and Eliminate Disparities in Screening for Hereditary Cancer Syndromes
Laura Senier, Northeastern University
Academic Rotunda – UConn
H4 – Paper Session A Virtue-Based Foundation for Genomic Privacy Policies
Susan Curtis, Mayo Clinic
California’s Eugenic Legacy: Demographic Analysis of State Eugenics Records
Nicole Novak, University of Michigan
Being in “the Being:” Genome as the Biological Exemplar of a Science-Religion Hybrid in the Quest for Explanations of Rational Consciousness
Marc Marenco, Pacific University
Researcher Perspectives on the Social and Ethical Implications of Epigenetics
Martine  Lappe, Columbia University
Patterson Auditorium – UConn

 

(Overflow seating in Friends Auditorium)

 

2:45 pm
Plenary Panel:  Genomics and Society: Expanding the ELSI Universe

James Evans, University of North Carolina
Pearl O’Rourke
, Harvard Medical School
Wylie Burke
, University of Washington

                                Moderated by: Paul Appelbaum, Columbia University Medical Center
Location: Academic Rotunda – UConn
3:30 pm
Adjourn