Personal Genetics Education Project

Rare disease, a family’s story and the power of social media

Seth Mnookin published a great story in the New Yorker about the Might family and their quest to understand their son’s unusual medical condition. In addition to highlighting the role genome sequencing can play in finding a diagnosis and informing medical treatment – still a frustratingly rare occurrence for families who are seeking answers – Mnookin also tackles a number of thorny issues, such as how publication practices can impact patient access to information.  He also highlights the ways in which the Might family and others have used social media to connect with and empower families in similar situations.

One of a kind: What do you do if your children has a condition that is new to science?

Upcoming Events

Nov 09

National Association of Biology Teachers annual conference

November 9 - November 12
Saint Louis MO
United States
Jan 25

CRISPR Workshop III: Public outreach, education, and engagement

January 25, 2018 - January 27, 2018
Berkeley CA
United States

In the News

As we finish up another week of Teaching the Genome Generation at the Jackson Lab in Bar Harbor Maine, teachers are excited to receive a copy of David Epstein's "The Sports Gene". pgEd loves leading the social and ethical dimension of this annual professional development course. Looking for some summer reading? Check out pged.org/book-corner/ ... See MoreSee Less

Posted by pgEd 2 months ago

As we finish up another week of Teaching the Genome Generation at the Jackson Lab in Bar Harbor Maine, teachers are excited to receive a copy of David Epsteins The Sports Gene. pgEd loves leading the social and ethical dimension of this annual professional development course.  Looking for some summer reading? Check out http://pged.org/book-corner/

What a wonderful three days at our Summer Institute! Thanks to our friends at Brockton High School for hosting us, and to all the teachers who came and shared their energy, passion and ideas. There will be lots for pgEd to get inspirations from as we develop our new unit of lessons on genetics and identity.
See everyone at our next workshop in Boston in less than two weeks!
... See MoreSee Less

Posted by pgEd 3 months ago

What a wonderful three days at our Summer Institute! Thanks to our friends at Brockton High School for hosting us, and to all the teachers who came and shared their energy, passion and ideas. There will be lots for pgEd to get inspirations from as we develop our new unit of lessons on genetics and identity.
See everyone at our next workshop in Boston in less than two weeks!

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