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Under which conditions should your health data be reused?

Research approved by a recognised ethics organisation. Publication of anonymised data only for approved health providers, approved commercial manufacturers, pharmacists, government lawmakers, eg for Covid decisions etc

Contributor (EN)
about 1 year ago

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When there is no pressure to give consent and patients are fully informed as to how their data will be used
Contributor (EN)
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I feel secure with current ethical expectations about the anonymization of data protecting my privacy as a patient, even though these protections will broadly prevent scenarios like the one described involving a research team contacting patients with the information they have discovered about the side effects of a treatment. Absent unusual circumstances, I think the best way for a discovery like this to be communicated to patients is through a specialist physician, who will have read a peer-reviewed scientific manuscript or listened to a peer-reviewed talk prepared by the researchers involved. Anonymizing data allows for the privacy of patients to be more accessibly protected, which allows more research and higher quality research to be performed, benefiting us all much more than a more immediate access to less vetted research would.
Deelnemer (BE)
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