Genomic data governance principles were largely developed for data collection and use in research contexts. Boundaries between genome research and clinical practice, however, are eroding, raising questions about whether current policies and assumptions behind those policies are still appropriate. This ELSI Friday Forum will address these questions – is the intent of data sharing what matters to data governance? If so, what does really matter? Can we assume that patients want their data to be shared if clinical genomic data leads to improvements in diagnostics, and further, that data can be shared for research purposes without express consent? What do we if patients are uncertain about whether the use of their data will lead to health care improvements that will benefit them or their communities?
Join the discussion with panelists Heidi Rehm, PhDand Keolu Fox, PhD,moderated by Malia Fullerton, PhD.
Mark your calendar for the Post-Forum Discussion,a half-hour informal networking session for audience members who would like to continue the conversation following the Forum. A Zoom link to the networking session will be provided in the Zoom Chat before the end of the forum and emailed to all registrants.
Did you miss the last ELSI Friday Forum in September? Click here to watch the recording of Remembering 9/11: Ethical, Legal and Social Issues with Using DNA for Disaster Victim Identification with panelists Amy Mundorff, PhD and Jay Aronson, PhD, moderated by Jennifer Wagner, JD, PhD.
2021 ASBH Annual Conference: Bioethics and Humanities at the Crossroads
October 11-16, 2021
To address emerging, high priority, and understudied ethical, legal, and social implications of genetics research (ELSI) issues and to enhance collaborations across institutions, the Center for ELSI Resources and Analysis (CERA) is pleased to call for proposals its second round of CERA Working Groups. The CERA will support up to two new Working Groups at a level of up to $20,000 over two years.
Initial proposals for CERA Working Groups are due October 15, 2021. Finalists will be notified on November 15, 2021 and invited to submit full proposals due December 31, 2021. Please click below for full details and to apply:
21,000 GenETHX Records Added to the ELSIhub Publications Database
We are excited to announce the migration of over 21,000 publications from the Genetics and Ethics Database (GenETHX) created by the Bioethics Research Library (BRL), Kennedy Institute of Ethics (KIE), Georgetown University into the ELSI Publications database on ELSIhub! The ELSIhub database now includes books, book chapters, conference proceedings, and journal articles selected by CERA staff from the over 45,000 citations in the full GenETHX database...
By Daphne Martschencko and Lucas Matthews, The Hastings Center
"The need for socially responsible communication about genomics research is greater than ever. New research into genomic influences on traits such as intelligence, educational attainment, household income, and sexual behavior is drawing media attention and public scrutiny. These social and behavioral traits are known to be influenced by a combination of genetic, social, and environmental factors. But attempts to draw conclusions about the capabilities of individuals or groups of people based on genetics has an ugly history, infused with racism and other biases. Today, research on the genetic contributions to human behavior and social outcomes is still being misappropriated by those who are looking for evidence to justify their beliefs in inherent racial and social inequalities. In response, many genetic scientists have taken steps to pre-emptively avoid misconceptions and misapplications of their work by creating frequently asked questions (FAQs) to explain their findings in specific studies. These FAQs give the context, scope, and limitations of their research..." READ MORE
Request for Abstracts Join us for the Fifth ELSI Congress: June 1-3, 2022 Columbia University, New York, NY
We welcome proposals for panels, papers, and posters on topics across the expanding range of ELSI research!
Deadline for abstract submission: December 1, 2021
Information on abstract submission, registration and more atELSIcon2022.org
CERA and ELSIhub are supported by a grant from the National Human Genome Research Institute and managed by teams at Stanford and Columbia Universities with partners at Harvard University and The Hastings Center.
Our mailing address is:
Columbia University Division of Ethics, 630 West 168 Street, PH 1525, New York, NY 10032