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\title{Science Discussion Series: What should and shouldn't be done with your
personal genetic data? Who should benefit? We are researchers and
advocates who are working on new models for DNA research. Let's discuss!}



\author[1]{ScienceModerator }%
\author[1]{r/Science AMAs}%
\affil[1]{Affiliation not available}%


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  \date{April 23, 2026}


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\begin{abstract}
Hi reddit! We're a group of scientists and advocates who believe that
the traditional genetics research model is outdated. We think that
people who participate in genetic studies should be involved in
decision-making, that research projects should collaborate, that samples
should be diverse, and that studies should use real world data. We need
these changes to improve our ability to discover treatments and cures
for diseases. But at the same time, researchers also need to ensure
participant privacy, data security, and give participants the chance to
weigh in on and directly benefit from research- medically,
informationally, and financially. Let's discuss! With us today are an
array of researchers and leaders from a variety of genetics backgrounds
working with a company, LunaPBC, on these questions. Dawn Barry
(u/Dawn\_Barry): I'm the President and Co-founder at LunaPBC, Board
Chair at Alzheimer's Association San Diego/Imperial Chapter, and former
VP Applied Genomics at Illumina. The twelve years I spent at Illumina,
Inc., I led pioneering teams in preemptive health screening, nutrition
security, and transplant diagnostics. I was also the co-founder of the
Illumina Understand Your Genome symposium, which is now owned by Genome
Medical. Bob Kain (u/Bob\_Kain): I'm the Chief Executive Officer and
Co-founder at LunaPBC, 2019 World Economic Forum's Tech Pioneer, and
former Chief Engineering Officer at Illumina. During my 15-year tenure,
Illumina grew from a research start up of 30 employees to a global
genomics leader of 3,000 employees with \$1.5 billion in revenue. My
team helped reduce the cost of genome sequencing from a million dollars
in 2006 to \$1,000 in 2015. The products developed enabled new
applications for DNA sequencing in agriculture, pathogen identification
and precision medicine. Today, I'm building a talented, ethical team
with unifying visions to create a world-changing solution and improve
the quality of life for all at LunaPBC. Scott Kahn, Ph.D
(u/Scott\_Kahn): I'm the Chief Information Officer at LunaPBC, Board of
Directors at Rady Children's Institute for Genomic Medicine, and former
Chief Information Officer and Vice President Commercial, Enterprise
Informatics at Illumina. I'm integrating data privacy and security
provisions that comply with GDPR and HIPAA at the world's first
community-owned health database that offer shares of ownership to health
data contributors. Kirby Bloom (u/Kirby\_Bloom): I'm the Chief Architect
at LunaPBC, former Head of Software for Applied Genomics at Illumina,
and MIDS candidate at the University of California, Berkeley. I'm
helping bridge the gap between research scientists and large scale data
analytics by building the tools needed to produce better insights for
health discovery. Sharon Terry (u/Sharon-Terry): I'm the President and
CEO of the Genetic Alliance, a network transforming health by promoting
openness and is founding CEO of PXE International, a research advocacy
organization for the genetic condition pseudoxanthoma elasticum (PXE).
My memberships and advisories include the International Rare Disease
Research Consortium and the Institute of Medicine Science and Policy
Board. I was instrumental in the passage of the Genetic Information
Nondiscrimination Act. Among other awards I received was the Clinical
Research Forum, Foundation's Annual Award for Leadership in Public
Advocacy in 2011, and PMWC 2019 Luminary Award Recipient. Yaniv Erlich,
Ph.D (u/Yaniv-Erlich): I'm the creator of DNA.Land, Chief Science
Officer of MyHeritage.com, and until recently, an Associate Professor of
Computer Science and Computational Biology at Columbia University. I'm a
TEDMED speaker (2018), the recipient of DARPA's Young Faculty Award
(2017), the Burroughs Wellcome Career Award (2013) and the Harold M.
Weintraub award (2010). Aristides Patrinos, Ph.D
(u/Aristides\_Patrinos): I am the Chief Scientist and Director for
Research of the NOVIM Group, Former Lead at the Human Genome Project,
LunaDNA Advisor, and leading authority on structural biology, genomics,
global environmental change, and nuclear medicine. I'm dedicated to the
development of synthetic biology and in the development of clean and
renewable fuels and chemicals, sustainable food products, and novel
medical applications. EDIT: Thank you to everyone who participated in
this important discussion about the future of health discovery. We
believe the fastest, most impactful change can only happen at the level
of community. Your voice matters. Please feel free to continue the
conversation at lunadna.com and @LunaDNA\_ on Twitter. Until then, it
was our pleasure chatting with you!%
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