EPPC Scholars Ask HHS to Withdraw Rule Standardizing Gender Ideology Terms in Medical Records and Preventing Open Sharing of Abortion Data

Published October 4, 2024

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By Eric Kniffin

On Friday, October 4, 2024, EPPC scholar Eric Kniffin submitted a public comment on a proposed rule by the Department of Health and Human Services (HHS) which would standardize terminology related to “sexual orientation,” “gender identity,” and the use of “pronouns” in medical health records and create new exceptions to Congress’ rules against information blocking that build on the Department’s deeply flawed and unlawful HIPAA Privacy Rule, finalized earlier this year.

HHS’s proposed rule states that states that gender identity must be coded in accordance with at least one of the following codes:

Relatedly, HHS states that pronouns must be coded using  the following sets of pronouns:

Kniffin argues in the comment: 

Though HHS has emphasized in other contexts that health care should be “evidence-based,” it has done nothing here to justify imposing this terminology on our nation’s medical system. Though a patient’s sex (referred to in the Proposed Rule as “birth sex”) is an objective fact that has obvious significance for providing medical care and interpreting a patient’s chart, the same cannot be said about sexual orientation and gender identity information

Regarding information blocking provisions in the rule, Kniffin explained in the comment:

“HHS proposed to expand the existing “privacy exception”… At present, this exception to the rule against information blocking is available only for individual-requested restrictions on EHI [electronic health information] sharing that are permitted by other applicable law. But the Proposed Rule would loosen this requirement, allowing the blocking of information sharing even … when the actor may have concerns that another law applicable to some or all of the actor’s operations could compel the actor to provide access, exchange, or use of EHI contrary to the individual’s expressed wishes.

HHS also proposes to create a whole new … exception to Congress’ rule against information blocking, a new “Protecting Care Access Exception.” Like the expansion of the “privacy exception” noted above, HHS claims that this change to the information blocking rule is necessary in light of Dobbs and the new HIPAA Privacy Rule. HHS says its proposed “Protecting Care Access Exception” … alleviate[s] concerns that an actor may violate information blocking rules when “an actor believes in good faith” that sharing EHI “could risk exposing a patient, provider, or facilitator of lawful reproductive health care to potential legal action based on what care was sought, obtained, provided, [or] facilitated.”

Kniffin, a former attorney at the DOJ’s Office of Civil Rights Division and current EPPC Fellow, went on to write:

“HHS’s proposal raises a number of important questions HHS should consider as it continues to evaluate the Proposed Rule … While the preamble to the 2024 HIPAA Privacy Rule states clearly HHS’s intent to frustrate legitimate law enforcement activity aimed at investigating potential violations of valid state pro-life laws, the rule also has implications for interactions between covered providers.

For example, Kniffin asked:

“Under the Proposed Rule, would an abortion provider violate HHS’s rules against information blocking if it provided to respond to inquiries from another medical provider regarding the details of any abortion performed? Under what circumstances would it be lawful or unlawful for the abortion provider to refuse to share EHI with the provider providing post-abortion care?”

Kniffin urged HHS to withdraw the above aspects of the proposed rule.

Other organizations and experts also submitted comments on the Department’s proposed rules, including:

• Advancing American Freedom (AAF)
• United States Conference of Catholic Bishops (USCCB)

Eric Kniffin is a fellow at the Ethics and Public Policy Center, where he works on a range of initiatives to protect and strengthen religious liberty as part of EPPC’s HHS Accountability Project.