Noteworthy Information
Open Source Body: Small data, self-research, open humans

An exploration of individuals using their own data – with a focus on quantified self, open humans, and various examples self-research where individuals collect and use their personal data in new ways.

Open Source Body: pequenos dados, auto-pesquisa, open humans

Uma exploração de indivíduos usando seus próprios dados - com foco em auto quantificado, open humans e vários exemplos de auto-pesquisa em que os indivíduos coletam e usam seus dados pessoais de novas maneiras.

Shaping the Terrain of AI Competition

How should democracies effectively compete against authoritarian regimes in the AI space? This report offers a “terrain strategy” for the United States to leverage the malleability of artificial intelligence to offset authoritarians' structural advantages in engineering and deploying AI.

Moldando o terreno da competição das IAs

Como as democracias devem competir efetivamente contra regimes autoritários no território das Inteligências Artificiais? Este relatório oferece uma "estratégia de terreno" para os Estados Unidos alavancarem a maleabilidade da inteligência artificial para compensar as vantagens estruturais dos governos autoritários na engenharia e implantação da IA.

The Open Patient (Video: 15:50min)

What happens when two brain cancer patients decide to take their futures into their own hands?

How to Make 10 Million Discoveries

Quantified Self co-founder Gary Wolf’s call for empowering individuals to study themselves with “everyday science”.

Preprint: Alternative personal data governance models

The not-so-secret ingredient that underlies all successful Artificial Intelligence / Machine Learning (AI/ML) methods is training data. There would be no facial recognition, no targeted advertisements and no self-driving cars if it was not for large enough data sets with which those algorithms have been trained to perform their tasks. Given how central these data sets are, important ethics questions arise: How is data collection performed? And how do we govern its' use? This chapter – part of a forthcoming book – looks at why new data governance strategies are needed; investigates the relation of different data governance models to historic consent approaches; and compares different implementations of personal data exchange models.

Bankrupt startup uBiome auctioned for 1% of its original valuation

What happens to personal data acquired during bankruptcy? My impression is that it's a mess, for all startup bankruptcies (not just this one). Firms that handle bankruptcies aren't remotely familiar with the tech, they don't know the difference between digital assets and office furniture.
I could speculate about security concerns, especially when assets are sold internationally... (and I've never seen anyone worried about this, which baffles me?)... the reality is probably the data almost always goes stale, becomes unreadable, and gets lost/forgotten.

Checklist for safe and responsible digital health research

My colleague Camille Nebeker at UCSD specializes in ethics with digital health – she's developed a checklist for “safe and responsible digital health research” - it's private but you can request a copy.

I Took DNA Tests in the U.S. and China. The Results Concern Me

Privacy is big question, as governments seek access to DNA data.

A glitch in diabetes monitors serves as a cautionary tale for health tech

Here’s the challenge for technology in health care: Success means that new tech also becomes too indispensable to fail. You can deal with Twitter being down, but not the loss of a device that keeps your kid’s blood sugar at safe levels.

The Open Food Repo

The Open Food Repo is a freely and openly accessible database of barcoded food products sold in Switzerland. It is run by the Digital Epidemiology Lab at EPFL.

The First Amendment Right to Speak About the Human Genome

No doubt unintentionally, the debate about return of results has taken on a striking resemblance to the 1520–1547 debate about translation of the English vernacular Bible. (Very US law but the section on the Bible is great.)


Tools
Modular

Of potential interest because of use of Slack as a communication channel isn't ideal (it's closed source, proprietary software, and not end-to-end encrypted), but it has network effects & user-friendliness over other options: Mozilla is switching from IRC to Riot/Matrix, hosted by https://modular.im/ – pricing is $1.50 per active user.

Dyne.org Think & Do Tank

Mentioned in the course of a membership discussion during the application of dyne.org