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 - ThreadSky

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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. https://www.nature.com/articles/s41588-024-02049-2 @pennmedresearch.bsky.social

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joepdel.bsky.social•30 days ago

Life stream of my thoughts, oh nice that someone is writing about this would love to read. Goes to paper about data sharing, hits paywall. Disappointed in the lack of consistency from authors. Requests a copy through research gate, waits to see if they come through. Will update this thread

joepdel.bsky.social•30 days ago

🖥️🧬 update, author responded quickly, there is hope left in the world. will report back after reading with my 2 cents (with an EU GDPR and data sovereignty lens ) on the matter.

joepdel.bsky.social•29 days ago

Have had a quick read, not quite what I was expecting but a good overview of the different models and terms used. Would have like to see some of the equity and benefit sharing angles explored which WHO has as key points in their updated guidelines: https://www.who.int/news/item/20-11-2024-who-releases-new-principles-for-ethical-human-genomic-data-collection-and-sharing

realjlo.bsky.social•30 days ago

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!

joepdel.bsky.social•30 days ago

Thanks for the quick response

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