Conference Schedule

Conference Schedule

 

 

 

PRELIMINARY CONFERENCE SCHEDULE
Download Preliminary Schedule

 

 

Monday, June 5, 2017

7:30 am

Registration & Refreshments

8:15 am

Welcome & Announcements
Location: Academic Rotunda – UConn

8:35 am

Keynote Address: Innovating Ourselves for the Era of Precision Health
Eric Dishman, Director, NIH Precision Medicine Initiative Cohort 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 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

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 CommunitiesNanibaa’ Garrison, Seattle Children’s Hospital
Exploring the Implications of Genomics in American Indian and Alaska Native CommunitiesPaul 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 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

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

Stephen Joffe, University of Pennsylvania Perelman School of Medicine
Gene-Editing Technologies and the Self: How Altering DNA Might Rewrite Disability Narratives

Shawna Benston, Columbia University
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
Testing Positive and Testing Negative for a Genetic Predisposition Both Have Detrimental Effects
Woo-Kyoung Ahn, Yale University
Academic Rotunda – UConn

 

3:00 pm

Break/Authors’ Table

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

Massey Auditorium – UConn
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
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

 

 

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

8:15 am

Welcome & Announcements

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;

Subhashini 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;

Nancy Kass, Johns Hopkins University;

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;

Eric Juengst, University of North Carolina – Chapel Hill;

John Lantos, Children’s Mercy Kansas City;

Aaron Goldenberg, Case Western Reserve University;

Amy McGuire, Baylor College of Medicine

Holt Conference Room – JAX GM
D4 – Paper Session Narratives of Gene Patenting

Jorge Contreras, University of Utah
Evolving Relationships and Evolving Duties: Researcher and Lab Liability for the Return of Genetic Testing Results         

Teneille Brown, Columbia University Medical Center
Using Patents to Limit Controversial Genomic Technologies: The CRISPR Case Study

Christi Guerrini, Baylor College of Medicine
What Would an Ethical Trial of Germline Gene Editing Look Like?

Bryan Cwik, Portland State University

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;

Paul Cerrato, Medscape, Medpage Today, IMedicalApps.com

Massey Auditorium – UConn
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

Auditorium – JAXGM
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/Authors’ Table

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 R. Kelly, Warren Alpert Medical School of Brown University;

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

Laura M. Ensign, Johns Hopkins School of Medicine

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
Chris Krenz, 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

8:15 am

Welcome & Announcements

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

Lisa Gehtland, RTI International;

Cynthia Powell, University of North Carolina – Chapel Hill;

Gail Henderson, University of North Carolina – Chapel Hill;

Don Bailey, RTI International

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
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
Falling Giants: Private Interests, CRISPR, and the Public Good in the Genomic Era
Benjamin Capps, Dalhousie 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