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@KadijaFerryman talking about precision medicine: connecting openness and equity. #OpenConCascadia19Permalink On twitter.com
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@KadijaFerryman Talking about how open science can address concerns about precision medicine. How can these principles be used to connect precision medicine research to health equity? #OpenConCascadia19Permalink On twitter.com
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@KadijaFerryman Precision medicine: using big data (including genomics) to make medical decisions at the individual level. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman AllofUs precision medicine initiative: 1 million patients with their data to uncover relationships between genetics and outcomes. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Precision medicine promises a lot; better care and outcomes, empowerment through engagement with their data. But big data tools have their downsides. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Data driven tools reproduces biases because research samples don't represent everyone. African americans are under-represented and misdiagnosed in precision medicine because of these biases. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Fairness in Precision Medicine project: examine promises and vulnerabilities in precision medicine. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Historical Biases: Past guidelines for lung cancer screening introduced biases, under representing African americans. Smoking habits of these individuals were not represented because they don't qualify. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Cascade of historical and embedded Biases leads to under representation and inequity. Points to vulnerabilities in precision medicine and undermine health equity. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Bias in implementation: precision medicine tools could be used in a discriminatory manner. Could they be used to deny people choices where they live and other health choices? Wellness recommendation programs could be used in a discriminatory manner. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Health technology can cross the line from prevention to punishment, especially for non-compliant people. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman How can open research principles address these challenges? Research data lifecycle can highlight vulnerabilities. Including more diverse particpants can have downstream impact on health equity. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Research programs could be explicit about historical biases in data, identifying them and contexualizing them. Making precision medicine more open could make room for reciprocation and refusal for participants. Refusing is part of open research. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Bench to Bedside research - being open means that biases can be exposed, and focused on prevention rather than punishment. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman "Some open movements can be used to preserve hegemonies". Participation should be emancipatory, pushing back and resisting power. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman Emancipatory empowerment in research can address these biases and inequities. #openconcascadia19Permalink On twitter.com
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@KadijaFerryman One way to reciprocate to participants: Shareholder stakes for participants in studies - they need to benefit from their participation.On twitter.com