Top Tweets for #ELSIVirtual
.@AllofUsResearch Engagement Core accomplishments spotlighted in @ELSI_con
https://t.co/3gElTvOhz1
@MeharryMedical
@VUMChealth
@DrCHWilkins
@Elizabethcohn
@drstrings13
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#ELSIvirtual #joinallofus #healthequityleaders
Great great event! Pity it could not be done in person and I could not be there as planned to meet again wonderful @Columbia people and for the first time some scholars I really esteem…yet totally successful in gathering outstanding presentations and discussions!#ELSIvirtual
Join us on June 15-16 in honoring 30 Years of the Genome at #ELSIVirtual! The Forum is free, but registration is required, so reserve your spot today!
https://t.co/RT6XaEXVOZ
Thank you all for joining us for #ELSIVirtual! Please continue to send us your questions and comments, and follow us on Twitter @ColumbiaEthics for updates on all things ELSI!
How long can we allow disparities to continue before it becomes deliberate indifference? Great question posed by @DNAlawyer #ELSIvirtual
Over the past 25 years, the scope of DNA used in law enforcement has been rapidly expanding - Jen Wagner #ELSIVirtual
Although black individuals make up only 13.26% of the US population, they make up 34.47% of forensic DNA databases - James Hazel #ELSIVirtual
End your day with the final session of #ELSIVirtual, "To Catch a Killer: Law Enforcement Uses of DNA Databases," with Amy McGuire, James Hazel, @DNAlawyer, and Christi Guerrini. Tune in at 3pm EDT!
"Ownership of data should go back to the tribes and tribes should be able to determine—as is their sovereign right—whether information is being published about their tribe and how that information is being presented." - Chief Lynn Malerba #ELSIVirtual
On community engagement with AIAN: “Its about a long-term relationship, not a brief encounter. How often and how early? I think most of us would agree that regular communication is a more authentic and realistic relationship—find a friend.” – Vanessa Hiratsuku #ELSIVirtual
Ahéhee (Thank You in Navajo) Dr. Claw for a fascinating presentation on enhancing ethical genomic research with indigenous communities. Thank you for sharing a great framework to help us navigate conducting genomics research with indigenous communities. #ELSIvirtual
“If you going to work with indigenous communities in genetics, you have to be willing to make lifelong relationships.” - Dr. Claw citing another trailblazer woman scientist. #ELSIvirtual
#ELSIVirtual @NanibaaGarrison why is there a lack of representation of Indigenous Peoples in genetic research studies? Reasons include distrust, perceived lack of benefits, concerns on interpretation of results or control and secondary use of data, other health priorities.
See "Genomic Research Through an Indigenous Lens: Understanding the Expectations" by Nanibaa’ A. Garrison: @NanibaaGarrison #ELSIVirtual https://t.co/6BKtA5gp3Q
"Consultation is important and it is more than just listening, it is getting to an agreement of how best to proceed." - Chief Lynn Malerba #ELSIVirtual
...Are we actually doing research that warrants trust? Are we presenting the opportunities to engage early enough that they should trust us with their time, their data, their blood, their DNA? - Consuelo Wilkins @DrCHWilkins #ELSIVirtual
Next up at #ELSIVirtual is our penultimate session, "Ethical Frameworks for Research Collaboration with Indigenous Communities," with Chief Lynn Malerba, @NanibaaGarrison, and @drkatclaw, moderated by Vanessa Hiratsuka. Tune in at 1:30pm EDT!
"Have we solved the power imbalance, for sure no. Have we raised the consciousness of how something can be constructed to do so, I think yes." - Elizabeth Cohn @Elizabethcohn #ELSIVirtual
Dr. Wilkins says we can’t just ask participants views and perspectives if we not really integrating them in the program’s we pursue. #ELSIvirtual
Dr. Wilkins says it’s important to prepare participants for engagement, but researchers also need to prepare in order to foster an environment of co-learning and balancing power dynamics. #ELSIvirtual
An extremely interesting session indeed, such an important topic and such an extraordinary panel! #ELSIVirtual
Our next #ELSIVirtual session will be starting at 11:45 EDT. Tune in for a panel on "Engaging Participants as Partners: ELSI Considerations in Large-Scale Precision Medicine Research," with Alecia Fair, Karriem Watson, @Elizabethcohn, and @DrCHWilkins.
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