realjlo.bsky.social
Jonathan LoTempio
@realjlo.bsky.social
71 followers 130 following 6 posts
Fellow in the bioethics of human data at Penn. Bioinformatics, ethics, policy, and science. Interested in making pangenomes and how human data flows.
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realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Mar 28
🧵4/4: and even more from me and @jonathanmoreno.bsky.social @naturegenet.bsky.social on #human #datasharing here:

www.nature.com/articles/s41...
Overcoming challenges associated with broad sharing of human genomic data - Nature Genetics
This Perspective discusses the definitions of ‘broad’ that have been used in the context of sharing of human genomic data and proposes a clarified and reformed terminology for describing genomic data ...
www.nature.com
realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Mar 28
🧵3/4: Read more on the #data #ethics of #23andMe in my @hastingscenter.bsky.social essay from November:

www.thehastingscenter.org/what-23andme...
What 23andMe Owes its Users
With concern about its stability, 23andMe should consider what information and protection it owes its users. So should other DTC genetic testing companies.
www.thehastingscenter.org
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realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Mar 28
🧵2/4: But how to preserve data? #NIH flagship Database of #Genotypes and #Phenotypes #dbGaP allows for data to be restricted to nonprofit use only, preserving scientific benefit of #23andMe data as well as corp value.

But #doge #RIFs #today will make this even harder, hurting everyone everywhere.
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realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Mar 28
🧵1/4: 'Such a trove of data may be put to good use... The firm “did an incredible thing in that they got people to pay to participate in research”, says Jonathan LoTempio, of @upenn.bsky.social . 100s of studies have drawn on 23andMe.'

www.economist.com/business/202...
How safe is your DNA in a bankruptcy?
23andMe’s demise raises thorny legal questions
www.economist.com
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Reposted by Jonathan LoTempio
stevejoffe.bsky.social
Steve Joffe @stevejoffe.bsky.social · Mar 24
Funding for science should not be a partisan issue. wapo.st/41UWFHA
Opinion | Funding for R&D isn’t a gift to academia
Investing in scientific research and development is vital to U.S. security.
wapo.st
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Reposted by Jonathan LoTempio
hollylynchez.bsky.social
Holly Fernandez Lynch @hollylynchez.bsky.social · Feb 25
Califf nails it: “It’s despicable to treat fellow human beings this way and a sign of immaturity of the people doing it"

F.D.A. Reinstates Fired Medical Device, Food and Legal Staffers www.nytimes.com/2025/02/24/s...
F.D.A. Reinstates Fired Medical Device, Food and Legal Staffers
The agency changed course just days after firing employees who oversee the safety of food and life-sustaining medical devices. Dozens of workers said they and others were back at work Monday.
www.nytimes.com
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Reposted by Jonathan LoTempio
altnps.bsky.social
Alt National Park Service @altnps.bsky.social · Feb 4
OPM is planning to fire all employees on probation (less than one year of employment). Agencies have until noon on Wednesday to submit a list of probationary employees to the OPM and indicate whether they wish to retain them—though it has been stated that this will not make a difference.
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realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Jan 30
Thx for ur interest. I don't check r'gate, do please email me at lotempio @ upenn . edu for a copy. It's the email listed in the paper, too! 😉

The paper will be on US NIH PMC in a few months, as per the agreement with Nature and NIH requirements. Open science, whatever that is, is hard!
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realjlo.bsky.social
Jonathan LoTempio @realjlo.bsky.social · Jan 22
What do you mean when you say that you've #shared your #data broadly? @jonathanmoreno.bsky.social and I published a new data sharing framework in @naturegenet.bsky.social along with #bioethics challenges for #genomics in the #ai era. www.nature.com/articles/s41... @pennmedresearch.bsky.social
Overcoming challenges associated with broad sharing of human genomic data - Nature Genetics
This Perspective discusses the definitions of ‘broad’ that have been used in the context of sharing of human genomic data and proposes a clarified and reformed terminology for describing genomic data ...
www.nature.com
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Reposted by Jonathan LoTempio
moezdawood.bsky.social
Moez Dawood @moezdawood.bsky.social · Dec 20
🚨 Excited to announce the Marker paper for the GREGoR Consortium! arxiv.org/abs/2412.14338

Accelerating #RareDisease diagnostics with cutting-edge #Genomics and global data sharing of omics and deep phenotyping from ~7500 individuals on NHGRI AnVIL and much more to come! 🧬
GREGoR: Accelerating Genomics for Rare Diseases
Rare diseases are collectively common, affecting approximately one in twenty individuals worldwide. In recent years, rapid progress has been made in rare disease diagnostics due to advances in DNA seq...
arxiv.org
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