"Who benefits from data sharing in Africa? What barriers exist in the data sharing ecosystem, and for whom? If much of the data sharing practice is shaped by the Global North, how can we ensure that the narrative for Africa is controlled by Africans?" 1/
Stakeholders in the African data sharing ecosystem. Those at the top of the iceberg hold significant power & leverage in guiding data sharing practices & policy compared to those in the hidden part of the iceberg. More powerful stakeholders wield disproportionate power. 2/
Dominant narratives around data sharing in Africa often focus on lack, insufficiency, deficit.
This framing minimizes the strength, agency, and scientific & cultural contributions of communities within the continent, and overlooks community norms, values, & traditions. 3/
Power asymmetries are common, resulting in imbalanced authorship & uneven bargaining.
Being on the ground in the field has the largest effect on data, but the data work of fieldworkers is framed as menial labor performed by easily replaceable & interchangeable individuals. 4/
A common threat is parachute-research, in which non-African researchers benefit from data sharing & open data and publish scientific work using African generated data available through open access initiatives – all while ignoring contributions of African communities & scholars 5/
Contexts are crucial to understanding data fully; data sharing practices that discard contexts risk becoming irrelevant & potentially harmful to local communities. We should shift into thinking in terms of *data settings* instead of datasets. 6/
Friends with no previous interest in AI ethics have been asking me about it recently, so I want to share several underlying concepts about AI & power that are important to understand. 🧵 1/
AI and Power: The Ethical Challenges of Automation, Centralization, & Scale
In Australia, automation was used to scale putting poor people into debt (often illegally). The govt went from creating 20,000 new debts PER YEAR to creating 20,000 new debts PER WEEK, many of them bogus, but hard for people to appeal. 3/
Rheumatoid arthritis, Crohn's disease, Multiple sclerosis, Type 1 Diabetes, Lupus, Hashimoto's, & Psoriasis impact a range of body systems, but all are autoimmune diseases.
Developing a lifelong autoimmune disease is often first triggered by an infection. 2/
Medicine is very siloed, and autoimmune diseases have often been treated in separate silos, based on which body system they impact, limiting our broader understanding of common threads. 3/
Even common viruses can have long-reaching, surprising, & devastating consequences. Fortunately, there are simple steps we can take to reduce transmission. 1/
The idea that a common childhood virus can quietly hang out in your nervous system, reactivate decades later to cause shingles, and then months AFTER shingles blisters clear up cause blood clots & strokes is mind-boggling to me 2/
VZV (chickenpox virus) is not just linked to strokes, but also linked to multiple sclerosis or vascular dementia (my note: possibly through reactivating other viruses).
After 12 years working as a data scientist & AI researcher, I have gone back to school for a Masters in Immunology. When I become fascinated by a topic, I want to learn as much as I can. 1/
My ultimate goal is to apply my machine learning & data ethics skills to immunology, but I want to make sure I fully understand the underlying domain & relevant context first. (With ML, it’s important to not just be a hammer searching for a nail). 2/
Immunology is a complex and vast field, full of open questions and not-yet-fully-understood phenomena.
Viral infections have been significantly associated with many neurodegenerative diseases, including Alzheimer’s. 3/ cell.com/neuron/fulltex…
I made a mastodon account a few weeks ago: @math_rachel@mastodon.social (in case twitter falls apart)
I haven't used it yet and have mostly been taking a social media break prior to this. 1/
I used to post a lot on twitter (about machine learning, working in tech, algorithmic harms, & later covid). I loved this place and I learned a lot from others here. Thank you to those I met & learned from. (I plan to stick around, but who knows what will happen.) 2/
Being high-risk during an ongoing pandemic, not being able to safely access healthcare, seeing how many people I used to respect are going along with the erasure & destruction of disabled people-- all this has shattered my previous worldview. 3/
This is a thorough, incredibly well-researched explanation of the Qld government's unscientific & unethical pursuit of a "wall of immunity", which was doomed to failure before it had even begun. by @ColinKinner
Please watch the embedded video of Chief Health Office Dr. Gerrard. Note that when he repeatedly says that it is inevitable & necessary for us to all catch covid, he is speaking as someone with significant political power. 2/
Messaging from @qldhealth continues to focus on social distancing & hand-washing, even now in 2022. It has been known since 2020 that #COVIDisAirborne (we need high-quality masks & ventilation; 1.5m != safety), yet public health officials have still not updated their approach 3/