Jonathan LoTempio
@realjlo.bsky.social
Fellow in the bioethics of human data at Penn. Bioinformatics, ethics, policy, and science. Interested in making pangenomes and how human data flows.
🧵4/4: and even more from me and @jonathanmoreno.bsky.social @naturegenet.bsky.social on #human #datasharing here:
www.nature.com/articles/s41...
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
March 28, 2025 at 12:12 PM
🧵4/4: and even more from me and @jonathanmoreno.bsky.social @naturegenet.bsky.social on #human #datasharing here:
www.nature.com/articles/s41...
www.nature.com/articles/s41...
🧵3/4: Read more on the #data #ethics of #23andMe in my @hastingscenter.bsky.social essay from November:
www.thehastingscenter.org/what-23andme...
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
March 28, 2025 at 12:12 PM
🧵3/4: Read more on the #data #ethics of #23andMe in my @hastingscenter.bsky.social essay from November:
www.thehastingscenter.org/what-23andme...
www.thehastingscenter.org/what-23andme...
🧵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.
But #doge #RIFs #today will make this even harder, hurting everyone everywhere.
March 28, 2025 at 12:12 PM
🧵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.
But #doge #RIFs #today will make this even harder, hurting everyone everywhere.
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!
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!
January 30, 2025 at 3:46 PM
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!
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!