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!
Abstract
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 Policy,
Communications and Education at NHGRI Sonya Jooma, M.A., health policy
analyst in the Policy and Program Analysis Branch in the Division of
Policy, Communications and Education at NHGRI Rebecca Hong, B.S.,
program analyst in the Policy and Program Analysis Branch in the
Division of Policy, Communications 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/ UPDATE: Wow,
thanks for all the really fantastic questions, Reddit-ers! We had so
much fun answering them and are just wrapping up. Happy Monday, all!