Data Sharing

Patient data linked with treatment protocols

As a scientist and patient's parent, I believe strongly in data sharing to help others, IF the data is de-identified and privacy is secure. Comments by a CCDI speaker, that suggest it is unethical for patients and parents to think that they should have some right to privacy and a choice to or not to share data, are extremely harmful to science and medicine, and it is a deeply troubling movement. On a related counter-point, current and former standard of care treatment protocols for pediatric cancer treatments are not available in the medical literature and are not available to academic institutions, the public, and clinicians unless the requesting individual is an approved affiliate of the entity deriving the "confidential" protocol. I believe privileged access to treatment protocols is fundamentally unethical, it hinders caregiver burden of care and caregiver support research, it hinders preclinical and clinical trial research, and contributes to the financial toxicity of pediatric cancers.

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Idea No. 990