The Failed Protection of Proposed Changes to HIPAA
ELSIcon2024 • Paper • June 12, 2024
Authors:
Speaker: Ellen Wright Clayton, JD, MD (she/her/hers) - Vanderbilt University
In the aftermath of Dobbs</em>, many states have chosen to ban almost all abortions with few exceptions. One common exception are cases where continuing the pregnancy poses a serious risk to the life and/or long-term physical health of the woman. Another common exception is detection of lethal fetal anomalies. Not surprisingly, the statutory language varies from state to state in ways that often matter. Shortly after Dobbs</em> was decided, the Office of Civil Rights published guidance that institutions were not required to provide information to law enforcement about “lawful” activities. HHS subsequently published a Notice of Proposed Rulemaking to amend HIPAA with the goal of making this prohibition clear. Unfortunately, in neither case are these state exceptions well-defined. What is a serious long-term risk to physical health? Which anomalies are lethal, especially in light of the case of Baby K, </em>an infant with anencephaly who lived for almost 2 years? Further, these laws do not acknowledge that non-lethal fetal anomalies themselves can also pose risks to the woman’s health. As a result, the question in prosecutions for abortions for maternal risk or fetal anomalies often is whether these procedures were actually lawful</em> under state law. This question precludes data protection and exposes clinicians in many states to the risk of onerous criminal penalties, typically including many years in prison, leading some clinicians to delay or deny care to women whose lives are threatened by their pregnancy until they are on death’s door.
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