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Genetic privacy and genome sequencing

Brown School's Policy Forum brings in top experts from across disciplines to tackle tough moral issue

Arguably among the most profound scientific advancements of our time, genome sequencing is having significant impacts on the understanding of human health and disease. Yet growing concerns exist around the matter of the return of a patient’s genetic results and the treatment of a patient’s genomic data at all levels of care.

The Policy Forum at the Brown School of Washington University in St. Louis, in conjunction with WUSTL’s Institute for Public Health, has assembled some of the country’s top experts for a panel discussion on the ethical implications of genetic privacy and incidental findings that may occur because of genome testing.

The panel, “First, Do No Harm: Genetic Privacy in the Age of Genome Sequencing,” will take place at 1 p.m. Tuesday, Feb. 25, in Brown Lounge in Brown Hall on WUSTL’s Danforth Campus.

The panel will be moderated by Sarah Gehlert, PhD, the E. Desmond Lee Professor of Racial and Ethnic Diversity at the Brown School and co-director of Community Health & Partnerships at the Institute for Public Health; and Kimberly J. Johnson, PhD, assistant professor at the Brown School.

“This issue is both timely and important, and this really will be among the first panels of its kind to dive deep into the issue of incidental findings,” Gehlert said. “Say you discover in the sequencing of a child’s genome that he or she has some genetic predisposition to a disease for which there is no cure. What does a parent do with that knowledge? Is the stress that might cause worth it?

“These are tough questions, but we’ve assembled some of the most knowledgeable experts in the field from across disciplines to talk about them,” Gehlert said.

The panel includes:

  • Laura Jean Bierut, MD, professor of psychiatry at Washington University School of Medicine in St. Louis;
  • Vence L. Bonham Jr., JD, associate investigator, National Human Genome Research Institute (NHGRI) Social and Behavioral Research Branch; senior advisor to the NHGRI Director on Genomics and Health Disparities; and branch chief of NHGRI’s Education and Community Involvement branch;
  • Ellen Wright Clayton, MD, JD, the Rosalind E. Franklin Professor of Genetics and Health Policy and founder, Center for Genetic and Health Policy at Vanderbilt University;
  • Jonathan M. Green, MD, associate dean for human studies and executive chair of the Institutional Review Board at Washington University, and professor of medicine in the Division of Pulmonary and Critical Care Medicine in the Department of Medicine; and
  • Lainie Friedman Ross, MD, PhD, the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics at the University of Chicago; associate director of the MacLean Center for Clinical Medical Ethics; and co-director of the University of Chicago Institute for Translational Medicine.

There will be time for questions after the presentation.

“The ethical problems posed by what we are learning about genomic sequencing may be life-changing for all of us,” said Sue Stepleton, PhD, director of the Brown School Policy Forum. “It’s exactly the kind of important discussion the Brown School’s Policy Forum is known for — bringing together experts from across disciplines to explore critical issues of the day.”

A reception will follow. RSVP to policyforum@wustl.edu.

For more information on the Policy Forum, visit here

For more information on the Institute for Public Health, visit here. 

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EXPERTS @ WUSTL
Sarah Gehlert
E. Desmond Lee Professor of Racial and Ethnic Diversity
(314) 935-3434
sgehlert@wustl.edu
Kimberly Johnson
Assistant Professor
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kijohnson@brownschool.wustl.edu