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Healthcare Ethics Committees Must Include a Disability Representative

Douglas Diekema will be in town on Friday, April 11, 2014.  He will be speaking at the University of Minnesota from 12:15-1:30 pm in Room 3-100 Mayo (East Bank Campus of the University of Minnesota).  His topic:  “Ashley X Revisited: Growth Attenuation and Children with Severe Developmental Disabilities.”

Recall that one of the outcomes of the investigation after the Ashley X case was that the ethics committee would include a disability representative.

I just finished reading Alicia Ouellette’s “Context Matters: Disability, the End of Life, and Why the Conversation Is Still so Difficult.”  This convinces me that the danger of disability bias is both very real and very broad.  

This bias must be mitigated, especially since HECs often have decision making power.  One good way to mitigate the risk of disability bias (following the federal IRB composition rules for prisoners and other vulnerable populations) would be to include a disability representative on the HEC.

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