Exec Director @OpenHumansOrg • Alum @ShuttleworthFdn • open (health|data|science|humans) • they/them 🏳️⚧️ • spouse of @cjbprime, parent, mad scientist
San Diego, CA
Joined September 2009
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- Following834
- Followers1.5K
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Hi, I'm Mad! Welcome to my blockchain rant. Specifically: for genomes, health, and personal data.
"Why aren't you using blockchain?" they ask me. I'll tell you why!
Maybe you can RT this – or quote specific points – to inoculate other folks against fuzzy-brained BS 😞 1/16
Mad Price Ball retweeted
It's out! A careful description of building a community research project using highly personal information, including self-report of symptoms and wearable data, based on principles of participatory knowledge making and individual control of data.
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I had the opportunity to speak this morning at #ADA2021 about who (open source) closed looping is for.
My take?
It's for everyone who wants to use it, although not everyone will choose to do so. But those who choose to use it should be able to access it. Here's why:
In particular, to Mysterious Reviewer #2: THANK YOU!
It was thoughtful and constructive. It took time for you to do that! I really like the updates it prompted. 🙏
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Check out the latest preprint by our @FIREPhD student @k_kloppenborg with support by @madprime and @gedankenstuecke to learn about how peer production is practically implemented in citizen science platforms. – at Bidart, France
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"Peer production" describes things like Wikipedia & open source - can that exist for science, too?
@k_kloppenborg uses three case studies to see how "citizen science" projects stack up!
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Germany is on the wrong side of history on this, valuing profits over human lives. Shameful stance. Even France supports the #TRIPSWaiver now. xitter.cf/dwnews/status/13903455… #PeoplesVaccine
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School reopened today! After more than a year, and two diagnoses of ADHD... 😓
What next?
For today at least, I felt like this scene: youtu.be/94lZKJz4t-I – at San Diego, CA
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Help fund trans-led research into the trans healthcare issues. Please donate if you can and share onwards so this amazing team can get to the full optimal finding target 👇👇 – at Wimblington, England
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Looking for a cause to support on #InternationalWomensDay ? I know some of the people involved in this one, great scientists and humans both.
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TRANSBIOME - a crowdfund for transgender health @ £4k of their goal already. new platform to me, too, nice to meet you @goteofunding. support & share! en.goteo.org/project/transbi…
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An important contribution to the health of transwomen and MtX folks from @OpenHumansOrg, @LehenaffClara and @gedankenstuecke, with h/t to Shuttleworth alum
@madprime.
Contribute here: en.goteo.org/project/transbi…
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Transbiome: A project to better understand the neovaginal flora #Transgender #WomensHealth #CitizenScience
en.goteo.org/project/transbi…
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Today, I’ve donated to the #Transbiome project. Why?
(a short thread)
en.goteo.org/project/transbi…
#openscience
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You can join the Keating Memorial Self Research weekly chat, Thursdays at 10 am Pacific time, to get help for your Quantified Self projects from an experienced group of peers: quantifiedself.com/blog/the-…
Gene drives are a profoundly interesting governance challenge: the power to play god, to change ecosystems.
Please share with anyone that might be interested!
Come work with us! New #postdoctoral job opening @UCSanDiego to work on public #engagement for #GeneDrive #Technology. Position supported via new NIH/NCATS R01 - retweets appreciated! Find out more here: bit.ly/35iu9SQ #science #ethics
Really amazing self-research by Steven Kaye on food ingredients and blood glucose w/ T2D! quantifieddiabetes.com/2020/…
Highlight: "insoluble fiber" blood glucose impact ranged from 76% to 0.4% of glucose IAUC (!!)
ingredients that are treated the same on nutritional labels D:
Whoa. I just called a number and got a busy signal.
I'm reminded of… youtube.com/watch?v=1OADXNGn…
soooo true – at San Diego, CA
An hour from now! I'll be sharing my self-research experiences too… 😁
Specifically, effects of testosterone therapy & transition (I'm non-binary) 🏳️⚧️
Sign up here for the zoom link! forms.gle/ZHsbxKLsnDFjco4V6
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On Thursday I'll share my transgender experiences with self-tracking & hormonal transition! 🏳️⚧️
& in celebration of @stevenkeating, curiosity, and the value of researching ourselves ❤️
Thurs 10am PDT / 7pm CEST
RSVP to get a zoom link: forms.gle/ZHsbxKLsnDFjco4V6
Please join us for a new set of self-research/personal science Show&Tell talks hosted with @OpenHumansOrg in honor of Steven Keating, July 23 2020. Details and RSVP here: forms.gle/ZHsbxKLsnDFjco4V6