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Patient Privacy Is Not Just About Medical Ethics — It's Vital to Racial Equity and Disability Rights

Clipboard with medical form and stethoscope attached
We should empower patients to seek care by maintaining the strongest possible medical confidentiality rules instead of watering down critical patient privacy protections.
Clipboard with medical form and stethoscope attached
Noam Shemtov,
Paralegal,
ACLU Speech, Privacy, and Technology Project
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June 10, 2021

The confidentiality of patient-doctor communications is a cornerstone of medical ethics and effective care, and rightly so — the information we divulge in the course of treatment is often highly sensitive, intimate, and revealing. We need patient privacy rules that are up to the task of protecting it. That’s why we recently sent a letter to the Department of Health and Human Services (HHS) opposing proposed modifications to the HIPAA Privacy Rule that would radically erode patient privacy protections and facilitate unnecessary disclosures of patients’ health information without their consent.

The touchstone of the HIPAA Privacy Rule is, and should be, patient consent. Never is this more important than when patients’ protected information risks being disclosed to law enforcement, the family regulation system (sometimes called the “child welfare system”), or other governmental actors. But the rule change HHS proposed in January of this year would disturb the Privacy Rule’s patient consent default and lead to a proliferation of disclosures to law enforcement and other problematic actors, bringing vulnerable patients into increased contact with systems that pose serious risks to their safety and health. And while the harms associated with lesser privacy protections implicate all of us, they will be borne most heavily by communities of color and people with disabilities. HHS must reject this outcome.

Here’s what that could look like for patients:


JINNY

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