ELSIcon2022: Innovating for a Just and Equitable Future

About the 5th ELSI Congress

Discussions at the 5th ELSI Congress, Innovating for a Just and Equitable Future, were focused on advancing justice and equity in the ELSI research domain through the application of innovative ideas and methods. The recorded presentations* from the 2022 congress make connections between the conference theme and a broad variety of ELSI research topics.

*Please note that the archive does not contain a small selection of presentations that were not recorded or for which permission to post was not granted. 

Topics

Title:
Paper: Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria
Authors:
Arti Singh
Michelle Nichols
Oyedunni Arulogun
Olorunyomi Olorunsogbon
Ezinne Uvere
Mayowa Ogunronbi
Joshua Akinyemi
Carolyn Jenkins
Kolawole Wahab
Albert Alpalu
Fred S. Sarfo
Lukman F. Owolabi
Rabiu Musbahu
Reginald Obiako
Ayodele Jegede
Mayowa Owolabi
Bruce Ovbiagel
Rufus Akinyemi
Title:
Paper: Community Perspectives on Electronic Consent Education for the Retention of Newborn Screening Bloodspots
Authors:
Erin Rothwell
Caren Frost
Bob Wong
Erin Johnson
Title:
Paper: The ELSI of Pandemic Biobanking
Authors:
Sara Watson
Title:
Paper: The Ethical, Legal, and Social Implications of Stroke Genomic and Biobanking Research in Sub-Saharan Africa: Community Member Perspectives and Factors for Consideration
Authors:
Michelle Nichols
Arti Singh
Olorunyomi Olorunsogbon
Ezinne Uvere
Mayowa Ogunronbi
Sylvia Melikam
Joshua Akinyemi
Kolawole Wahab
Albert Alpalu
Fred S. Sarfo
Lukman F. Owolabi
Rabiu Musbahu
Reginald Obiako
Carolyn Jenkins
Mayowa Owolabi
Bruce Ovbiagele
Oyedunni Arulogun
Rufus Akinyemi
Title:
Paper: Willingness towards re-use of donated biosamples for stroke genomic research among West African stroke patients and stroke-free individuals
Authors:
Olorunyomi Olorunsogbon
Muyiwa Adigun
Babatunde R. Ojebuyi
Joshua Akinyemi
Kolawole Wahab
Albert Alpalu
Fred S. Sarfo
Lukman F. Owolabi
Rabiu Musbahu
Reginald Obiako
Mayowa Ogunronbi
Michelle Nichols
Carolyn Jenkins
Ayodele Jegede
Raj Kalaria
Mayowa Owolabi
Bruce Ovbiagele
Oyedunni Arulogun
Rufus Akinyemi
Title:
Paper: Consumer Willingness to Share Personal Digital Information for Health-Related Uses
Authors:
David Grande
Nandita Mitra
Raghu Iyengar
Raina Merchant
David Asch
Meghana Sharma
Carolyn Cannuscio
Title:
Paper: "Extremely slow and capricious:" Genetic Researcher Experiences Using Shared Data Resources
Authors:
J. Scott Roberts
Title:
Paper: Dorothy, We’re Not in dbGaP Anymore: Emerging Cloud-Based Biomedical Data and Analysis Platforms and their Implications for Data Stewardship
Authors:
Sarah Nelson
Jacklyn Dahlquist
Title:
Paper: Neglected ELSI in Biobanking: Addressing Issues of Governance, Stewardship, and Equity
Authors:
Roselle Ponsaran
Title:
Panel: If we build it will they come? Navigating ELSI considerations for broad and responsible use of All of Us data by non-traditional researchers
Authors:
Laura Beskow
Stephen Sodeke
Title:
Paper: Genetic data and the collective good: participants as leaders to reconcile individual and public interest
Authors:
Susi Geiger
Title:
Paper: The Individual Genome as a Commons: Getting Genome Conceptualization and Governance Right
Authors:
Title:
Paper: Genetic testing for hereditary cancer risk in India: A Case Study
Authors:
Pooja Chitre
Janis Geary
Title:
Panel: Sharing Data: Speedbumps on the Translational Trail
Authors:
Kathryn Maxson Jones
Title:
Paper: An ELSI-informed strategy to use DNA data for humanitarian family reunifications
Authors:
Diana Madden
Title:
Paper: In the Shadows of Virtual Family Trees
Authors:
André Brock
Katrina Ellis
Lynette Hammond Gerido
Title:
Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective
Authors:
Jusaku Minari
Title:
Paper: Fresh Air for Genetic Data Sharing
Authors:
Jill Robinson
Matthew Blank
Juli Bollinger
Janis Gear
Title:
Paper: Informational Disparities in Electronic Health Records: Implications for Delivery of Hereditary Cancer Genetic Services
Authors:
Daniel Chavez-Yenter
Xiangying Chu
Yuyu Chen
Melody S. Goodman
Title:
Panel: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
Authors:
Katherine Blinzinsky
Sonya Jooma
Title:
Paper: Population Frequencies of Hereditary Cancer Gene Variants in Diverse Population Groups
Authors:
Janis Geary
Kara Hapke
Title:
Paper: Physician and patient perspectives on the role of the microbiome in the prevention and treatment of colorectal cancer: the ethics of uncertainty in emerging science
Authors:
Juli Bollinger
Sara Glass
Cynthia L. Sears
Gail Geller
Title:
Late-Breaking: South Africans’ opinions on human heritable genome editing: Promoting equal access as key to the future
Authors:
Donrich Thaldar
Bonginkosi Shozi
Title:
Paper: A Survey on Public Perception toward the Korean National Bio Big Data Project
Authors:
Ilhak Lee
Hyun-Young Park
Chai Hee Youl
Jeong Eun Kim
Hannah Kim
Jihyun Yang
Title:
Paper: Whose future should we worry about?
Authors:
Elisa Calleja
Title:
Paper: Embryoids: What are they, should we be concerned, should they be regulated, and if so, how?
Authors:
Ana Iltis
Kirstin Matthews
Title:
Paper: Facilitators and barriers to ethical machine learning in healthcare: A qualitative study on developer perspectives of potential harms
Authors:
Ariadne Nichol
Meghan Halley
Carole Federico
Pamela Sankar
Title:
Paper: The Biologization of Morality: Criminal Justice as a Matter of Public Health
Authors:
Zachary Ascherl
Title:
Panel: Developing an Evidence Base for Investigative Genetic Genealogy (IGG) Policy-Making
Authors:
Natalie Ram
Title:
Paper: Public Engagement in Governance of Human Genome Editing in the Post-He Jiankui Era
Authors:
John Conley
Rebecca Walker
Title:
Late-Breaking: Victims of Eugenic Sterilization in Utah: Demographics and Survivor Estimate
Authors:
James Tabery
Nicole Novak
Lida Sarafraz
Aubrey Mansfield
Title:
Panel: The Limits of Consent and Patterns of Coercion in U.S. Histories of Eugenic Sterilization
Authors:
Nicole Novak
Heather Dron
Marie Kaniecki
Levity Smith
Juan Gudino
Title:
Flash: What Led to the Abolition of Iowa’s State Eugenics Program in 1977?
Authors:
Bridget Easler
Breanna Rinker
Alexandra Minna Stern
Elyse Thulin
Nicole Novak
Title:
Flash: How Did the Biodeterministic View of Criminality Influence Coercive Sterilization in the State of Iowa from 1934 to 1976?
Authors:
Darian Thompson
Nina Vo
Stella Murphy
Juan Gudino
Nicole Novak
Title:
Flash Session 1
Authors:
Julie Beans
Cheng Chen
Stella Murphy
Nina Vo
Breana Rinker
Bridget Easler
Title:
Flash Session 2
Authors:
Amy Blumling
Shawn T. Sorge
Eric Anderson
EJ Dusic
Title:
Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research
Authors:
Laura Beskow
Leslie Wolf
Title:
Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa
Authors:
Muyiwa Adigun
Babatunde R. Ojebuyi
Joshua Akinyemi
Kolawole Wahab
Albert Alpalu
Fred S. Sarfo
Lukman F. Owolabi
Rabiu Musbahu
Reginald Obiako
Mayowa Ogunronbi
Michelle Nichols
Carolyn Jenkins
Ayodele Jegede
Raj Kalaria
Mayowa Owolabi
Bruce Ovbiagele
Oyedunni Arulogun
Rufus Akinyemi
Title:
Paper Session 1
Authors:
Sara H Katsanis
Sarah Roth
Rebecca Mueller
Diana Madden
Title:
Paper Session 2
Authors:
Claudia Azuelos
Joel Pacyna
Title:
Paper Session 3
Authors:
Drew Blasco
Jessica Hunter
Pooja Chitre
Title:
Paper Session 4
Authors:
Juli Bollinger
Jennifer Young
Zachary Ascherl
Leslie Wolf
Title:
Paper Session 5
Authors:
Emily Mrig
Susan Trinidad
Title:
Paper Session 6
Authors:
Caitlin McMahon
Nicole Foti
Mikaella Caruncho
Title:
Paper Session 7
Authors:
Anna Lewis
Monica Taylor-Desir
Title:
Paper Session 8
Authors:
Title:
Paper Session 9
Authors:
Crystal Gonzalez
Title:
Paper Session 10
Authors:
Ruth Farrell
Kristina Suorsa-Johnson
Susan Markens
Christina Collart
Title:
Paper Session 11
Authors:
Jessica L. LeBlanc
Lisa Dive
Title:
Paper Session 12
Authors:
Carolyn Neuhaus
Johanna Crane
Marilyn Baffoe-Bonnie
K. Jameson Floyd
Michelle Nichols
Title:
Paper Session 13
Authors:
Arti Singh
Roselle Ponsaran
Title:
Paper Session 14
Authors:
Kiana Amini
Vardit Ravitsky
John Conley
Jennifer James
Title:
Paper Session 15
Authors:
Drew Blasco
Katrina Romagnoli
Blake Vuocolo
Title:
Paper Session 17
Authors:
Shameka Poetry Thomas
Title:
Paper: Cultivating just & equitable genomics research partnerships with community health centers
Authors:
Johanna Crane
Carolyn Neuhaus
Title:
Panel: Engagement with Historically Marginalized Communities: Methods, Positionality and ELSI in Precision Medicine Research
Authors:
Nanibaa' A. Garrison
Title:
Paper: Disrupting the status quo: a new model for benefit sharing in genomics research, a case study from South Africa
Authors:
Erin Burke
Michèle Ramsay
June Fabian
Title:
Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
Authors:
Karen Meagher
Monica Taylor-Desir
Title:
Paper: Navigating community engagement in clinical trial research
Authors:
Mikaella Caruncho
Jennifer James
Title:
Panel: Out of the tower and onto the ground: engaging communities and scientists in emergent research priorities
Authors:
Sara Ackerman
Title:
Paper: Mapping Diversity and Equity in Precision Medicine Research: Towards an Ethics of Inclusion
Authors:
Title:
Paper: Mandating Diversity in the Context of Inequity: Re-examining the Research-Care Divide in Precision Medicine Research
Authors:
Nicole Foti
Emily Vasquez
Caitlin McMahon
Title:
Paper: Precision medicine for whom? Upstream and downstream exclusion
Authors:
Title:
Paper: Democratizing Knowledge for Sickle Cell Disease Gene Therapy: A Deliberative Stakeholder Engagement Approach
Authors:
Kiana Amini
Vence Bonham
Title:
Paper: Return of Secondary Genomic Findings: Experiences of Sickle Cell Disease Research Participants
Authors:
K. Jameson Floyd
Ashley Buscetta
Vence Bonham
Title:
Flash: Revisiting the ethics of secondary findings in diagnostic genome-wide sequencing
Authors:
Michael Mackley
Title:
Paper: What I learned about sequencing from my critically ill daughter
Authors:
Jill Robinson
Title:
Flash: The Perspective on Healthcare Providers on the Return of Secondary Genetic Findings in Africa
Authors:
Abimbola Oladayo
Sydney Prochaska
Tamara Busch
Lanre Adeyemo
Lord Jephthah Joojo Gowans
Mekonen Eshete
Waheed Awotoye
Azeez Alade
Adebowale Adeyemo
Peter Mossey
Jeffrey Murray
Azeez Butali
Title:
Paper: Is it just for a screening program to give people all the information they want?
Authors:
Lisa Dive
Title:
Flash: Engaging Adolescents in Genomic Decision Making
Authors:
Amy Blumling
Cindy Prows
Kristin Childers-Buschie
Title:
Panel: Ethical, Clinical, Legal, and Economic Issues Surrounding Genetic Variant Reinterpretation
Authors:
Gary Marchant
Jose Pagan
Title:
Paper: Interrogating the Value of Return: Stakeholders’ Perspectives on Return of Results in Biomedical Research
Authors:
Caitlin McMahon
Nicole Foti
Mel Jeske
William Britton
Title:
Panel: The Impact of Receipt of Genetic Test Results for Autism
Authors:
Julia Wynn
Robert Klitzman
Title:
Paper: Consumers’ Perspectives Following Direct-to-Consumer Genetic Testing for Cancer Risk
Authors:
Brigitte Cronier
Lisa Kessler
Angela Bradbury
Title:
Welcome and Keynote: The Fallacy of Biological Race: Systemic Racism in Genomics
Authors:
Ruqaiijah Yearby
Title:
Plenary: Ableism, Audism, Ethics, and Genetics: A Just and Equitable Deaf Future
Authors:
Teresa Blankmeyer-Burke
Title:
Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease
Authors:
Keith Wailoo
Title:
Moderated Plenary Panel
Authors:
Ruqaiijah Yearby
Teresa Blankmeyer-Burke
Keith Wailoo
Title:
Flash: Genetic Attribution and Felt Stigma in People with Epilepsy
Authors:
John B. Wetmore
Title:
Panel: Beyond the Binary: A Panel Discussion About Gender, Genomics, and Justice
Authors:
Leila Jamal
Tala Berro
Kellan Baker
Kimberly Zayhowski
Title:
Paper: The Goldilocks Conundrum: Disclosing Discrimination Risks in Informed Consent
Authors:
Sonia Suter
Aaron Scherer
Title:
Panel: Voluntary Genetic Testing in the Workplace: An ELSI Analysis
Authors:
J. Scott Roberts
Title:
Flash: INSIGHT @ Work: An Interdisciplinary Study on the Ethical, Legal and Social, Implications (ELSI) of Voluntary Workplace Genomic Testing (wGT)
Authors:
Alyx Vogle
Rebecca Ferber
Kerry Ryan
Gregory Feero
Kunai Sanghavi
Wendy Uhlmann
Charles Lee
J. Scott Roberts
Title:
Panel: Disability Justice and Precision Medicine Across the Lifespan: Towards a Future of Equity and Access
Authors:
Kevin Mintz
David Wasserman
Leslie Francis
Andrew Peterson
Title:
Paper: A genetic counseling tool to reduce genetic essentialism and stigma/discrimination related to a hypothetical genetic risk for psychosis by educating high risk individuals about genetic malleability
Authors:
Haley Park
Eleanor Zinn
Tanya Mehdizadeh
Lawrence Yang
Title:
Paper: Supporting Shared Decision Making for Parents of Infants/Young Children with Disorders/Differences of Sex Development: Creation of a Genetic Testing Decision Aid
Authors:
Sophie Lightfoot
Melissa Gardner
Meg Carley
Larry Gruppen
Lauren Mohnach
Jodie Johnson
Dawn Stacey
David Sandberg
Kristina Suorsa-Johnson
Title:
Flash: Communicating precision medicine research: multidisciplinary teams and diverse communities
Authors:
Julie Beans
Title:
Flash: Distributional Cost-Effectiveness Analysis to Incorporate Health Equity Concerns in the Assessment of the Value of Precision Medicine Technologies
Authors:
Cheng Chen
Jeroen Jansen
Title:
Paper: Patients’ and Parents’ Perceived Utility of Genomic Sequencing: Instrument Development and Validation
Authors:
Caryn Rubanovich
Jill Robinson
Sarah Classen
Janet Malek
Benjamin Wilfond
Carol Horowitz
Christine Rini
Barbara Biesecker
Sara Knight
Title:
Late-Breaking: Concordance with Pharmacogenomic Clinical Decision Support Recommendations is High Following Preemptive Pharmacogenomic Testing
Authors:
Kurt D. Christensen
Catherine Hajek
Joel Van Heukelom
Madison Hickingbotham
Amanda Massmann
Emilie Zoltick
April Schultz
Title:
Late-Breaking: Genetics Adviser: The development, usability and acceptability testing of a patient-centered digital health application to support clinical genomic testing
Authors:
Yvonne Bombard
Title:
Paper: Why do Primary Care Patients Pursue Genetic Testing as an Elective Clinical Service? Findings from the Sanford Chip Program
Authors:
Jessica LeBlanc
Kurt D. Christensen
Emilie S. Zoltick
Megan Bell
Lauren N. Galbraith
Leila Jamal
Christine Y. Lu
Jennifer R. Leonhard
Dylan M. Platt
Catherine Hajek
Title:
Paper: Interest in genetic testing offered as part of routine healthcare among an ethnically diverse sample of young women
Authors:
Jemar Bather
Daniel Chavez-Yenter
Brianne Daly
Alexis Vega
Wendy Kohlmann
Title:
Flash: Self-Identified Spirituality and Interest in Genetic Testing for Hereditary Cancer Risk
Authors:
Tesla Theoryn
Deborah J. Bowen
EJ Dusic
Kevin C. Cain
Brian Shirts
Elizabeth Swisher
Jeannine Brant
Title:
Paper: Awareness and Utilization of Genetic Testing among Hispanic/Latino Adults Living in the US: The Hispanic Community Health Study/Study of Latinos
Authors:
Kurt D. Christensen
Mengran Zhang
Lauren Galbraith
Einat Granot-Hershkovitz
Sarah Nelson
Sara Gonzalez
Maria Argos
Krista Perreira
Martha Daviglus
Carmen Isasi
Jianwen Cai
Gregory Talavera
Carrie Zawatsky
Robert Green
Rosario Isasi
Robert Kaplan
Tamar Sofer
Title:
Paper: The need to consider a priori motivations and deterrents: A systematic review of elements influencing the consent process for genetic tests from the perspective of patients.
Authors:
Frederic Coulombe
Anne-Marie Laberge
Title:
Flash: Genetic testing for addiction: A qualitative examination of interest, motivations, and concerns among patients with gambling disorder and alcohol use disorder.
Authors:
Shawn Sorge
Matthew Lebowitz
Title:
Flash: Latina women’s knowledge of, preferences for, and experiences with prenatal genetic testing: A scoping review
Authors:
Natalie Grafft
Maria Pineros Leano
Andrew Dwyer
Title:
Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice
Authors:
James DuBois
Ana Iltis
Title:
Paper: How useful is genome sequencing to parents of pediatric cancer patients? Findings from the Texas KidsCanSeq Study
Authors:
Janet Malek
Jill Robinson
Amanda Gutierrez
Sarah Classen
Sarah Scollon
D. Will Parsons
Sharon Plon
Title:
Panel: The Ethics of Influence and Choice Architecture in Genomics: Where Have We Been and Where Are We Going?
Authors:
Benjamin Berkman
Susanna McGrew
Leila Jamal
Title:
Flash: Socioeconomic Status and Interest in Pursuing Genetic Testing for Hereditary Cancer in a US Based Population
Authors:
EJ Dusic
Deborah J. Bowen
Robin Bennett
Tesia Theoryn
Kevin C. Cain
Elizabeth Swisher
Jeannine Brant
Brian Shirts
Catharine Wang
Title:
Paper: Provider Practices in Referring for Germline Genetic Testing for Men with Prostate Cancer at a Safety-Net Hospital
Authors:
Christine Gunn
Emma Li
Gretchen Gignac
Magdalena Pankowska
Stephanie Loo
Kim Zayhowski
Catharine Wang
Title:
Flash: Patients’ expectations of benefits from large-panel genomic tumor testing in rural community oncology practices
Authors:
Eric Anderson
Paul Han
Title:
Paper: Is Non-invasive Prenatal Testing Really Invasive? Examining Black Women’s Perceptions of Non-Invasive Prenatal Testing for Sickle Cell Disease
Authors:
Shameka Poetry Thomas
Title:
Paper: Why Do Patients Drop Out of Population-Based Screening for Hereditary Cancer Risk?
Authors:
Catharine Wang
Kevin C. Cain
Elizabeth Swisher
Deborah J. Bowen
Susan Trinidad
Title:
Paper: Attitudes toward and actual uptake of genetic testing among a nationally representative sample of middle-to-older aged U.S. adults
Authors:
Drew Blasco
Sara Feldman
J. Scott Roberts
Title:
Panel: How does Genetics and Racial Disparities influence Stillbirth Risk and Reoccurrence?
Authors:
Tsegaselassie Workalemahu
Sarah Heerboth
Naomi Riches
Erin Rothwell
Title:
Late-Breaking: Impact of a direct-to-consumer (DTC) report on Alpha-1 antitrypsin deficiency (AATD) risk on clinical diagnosis of disease and on self-reported behaviors
Authors:
Sarah Elson

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ELSI Congresses

  • The biennial ELSI Congress provides a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal, and social implications of genetic and genomic research and its translation into clinical care. This page is an archive of recorded presentations that took place at the most recent ELSI Congresses, which were co-organized by the Division of Ethics at Columbia University and the Stanford Center for Biomedical Ethics with support from the National Human Genome Research Institute.

ELSI Congresses