Hi! We’re program directors for the National Human Genome Research Institute’s Ethical, Legal and Social Implications Research Program. We’re here to answer your questions about how genomics impacts society (because it does)! Ask us anything!

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The reach of genomics is wide-ranging and can touch on many different aspects of society from forensics, to how we understand our ancestry, to the promise of precision medicine for all individuals and populations. When the Human Genome Project was launched in 1990, the Ethical, Legal and Social Implications Research Program at the National Human Genome Research Institute (NHGRI – we’re one of the 27 institutes and centers that make up the NIH) was launched alongside it, with the anticipation that once we started generating massive amounts of human genomic data, there’d be lots of societal factors to consider.

Now that the Human Genome Project has been completed and researchers and clinicians are sequencing human genomes faster than ever, considering the societal implications of genomic data and what we can learn from it is even more crucial. With great amounts of data comes great responsibility to use the data in an ethical and effective way. We’re experts in these types of issues and we want to know what questions you have about how genomic data can impact your medical care, your interpretation of your ancestry, or just your everyday life. Our research program covers a range of issues, but here are some questions to jumpstart your curiousity and help you come up with your own!

• How do we incorporate race or ethnicity in genomics research, and how does self- reported race, ethnicity, or ancestry change how we are prescribed meds and cared for by our doctors?

• What ethical considerations do we need to think about in genomic testing of newborns?

• How should direct-to- consumer genomic tests, like 23andMe be regulated, used and marketed?

• What privacy protections are in place when sharing your genetic information?

• Can my genomic information be used to discriminate against me?

• What’s the deal with CRISPR gene-editing system? What kinds of questions do new technologies like CRISPR raise?

We want to know what you’re curious about, so ask us anything!

Your hosts today are:

Lawrence Brody, Ph.D., division director in the Division of Genomics and Society at NHGRI

Joy Boyer, B.A., program director in the Division of Genomics and Society at NHGRI

Dave Kaufman, Ph.D., program director in the Division of Genomics and Society at NHGRI

Nicole Lockhart, Ph.D., program director in the Division of Genomics and Society at NHGRI

Cristina Kapustij, M.S., chief of the Policy and Program Analysis Branch in the Division of Communications, Policy and Education at NHGRI

Sonya Jooma, M.S., program analyst in the Policy and Program Analysis Branch in the Division of Communications, Policy and Education at NHGRI

Rebecca Hong, B.S., program analyst in the Policy and Program Analysis Branch in the Division of Communications, Policy and Education at NHGRI

Relevant links:

Learn more about the Ethical, Legal, and Social Implications (ELSI) Research Program: https://www.genome.gov/elsi/

And if you want more inspiration to come up with questions, here’s a longer list of the types of research we support: https://www.genome.gov/27543732/elsi-research- domains/

">Hi! We’re program directors for the National Human Genome Research Institute’s Ethical, Legal and Social Implications Research Program. We’re here to answer your questions about how genomics impacts society (because it does)! Ask us anything!