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Harvard Medical School: Bridging the Trust Gap - Unlikely partners aim to reduce disparities in genetics education by Stephanie Dutchen

It’s going to take a long time to build trust. We have to involve not only community members but also community leaders, nurses, scientists, doctors, geneticists, researchers … everyone.
— Jeri Lacks Whye

They came from across the country: representatives from genetics, genomics and gene-editing companies; leaders of faith-based communities and members of the entertainment industry; experts in education and health care; business executives and government officials.

These seemingly disparate groups gathered at Harvard Medical School to identify common goals, build trust and advance efforts to engage underserved communities in conversations about personal genetics.

The “Industry Forum for Forging Community Partnerships” was convened in May by the HMS Department of Genetics’ Personal Genetics Education Project, or pgEd, as part of its mission to raise public awareness of and start conversations about genetics research and its ethical, legal and social implications.

“Now that gene editing and the $1,000 genome are a reality and national projects like the Precision Medicine Initiative are trying to recruit more people from underserved and minority communities, it’s especially important for people with different perspectives to exchange ideas about how to best serve communities who, for historical reasons, might be suspicious of geneticists,” said meeting organizer Johnny Kung, HMS research associate in genetics and director of new initiatives for pgEd.

The HMS Office of Communications talked with two attendees about some of the goals and challenges of reducing disparities in genetics education:

  • Jeri Lacks Whye, granddaughter of the late Henrietta Lacks, an African American woman whose cancerous cells became a widespread medical research tool without her consent; and
  • Ann Merchant of the Science & Entertainment Exchange, a program of the National Academy of Sciences that connects scientists and engineers with entertainment industry professionals to combine accurate science with engaging storylines.

Read the abbreviated conversation here

Also, learn more about the Industry Forum for Forging Community Partnerships, an event held by the Personal Genetics Education Project at Harvard Medical School, here


Shakir Cannon