Content-type: text/html Downes.ca ~ Stephen's Web ~ Proposed Guidance Regarding Broad Consent for the Storage and Use of Data and Human Biological Materials

Stephen Downes

Knowledge, Learning, Community

This is a proposed statement on the meaning of 'broad consent' for the storage of and use of data and human biologic materials with reference to the Tri-Council Policy Statement (TCPS) on ethical research. 'Broad consent' means "consent for unspecified research." There's a lot of overlap between this document and European regulations, including the provisos that subjects "must be able to request withdrawal of their stored data," that "consent must be free of coercion and undue influence," and "a means for participants to obtain ongoing repository information." Consent, in other words, is not a simple one-off click of a 'terms of use' button that gives data collectors carte-blanche. Those who collect data have an ongoing responsibility to those from whom the data was collected. Submit your comments by email at secretariat@srcr-scrr.gc.ca by October 4th 2021, using the subject 'TCPS 2 consultation'. Image: Price & Cohen, Privacy in the age of medical big data.

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Stephen Downes Stephen Downes, Casselman, Canada
stephen@downes.ca

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Last Updated: Apr 26, 2024 04:12 a.m.

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