The Supreme Court’s recent ruling overturning Roe v. Wade has far-reaching effects from a human rights, healthcare, and social impact perspective. The American College of Medical Informatics (ACMI) is an organization of members having diverse backgrounds and ideologies. However, as a community of leading professionals at the intersection of health and information technology, this moment requires a clear and direct response about the impact of this decision, especially the grave concerns over the potential misuse of health information to investigate and prosecute patients and healthcare professionals.
ACMI is troubled by the overturning of nearly a half century of protecting patients’ autonomy to make independent and highly personal reproductive health care decisions. Multiple studies and experience from the pre-Roe era make clear that this decision will not end abortions. Instead, many patients will pursue unsafe procedures that risk devastating consequences, including their lives. ACMI is also deeply concerned about the likely disproportionate impact this decision will have on patients already suffering from disparities in American health care – including people with low incomes, those living in rural settings, and the BIPOC (Black, Indigenous, and people of color) community. In addition to the direct effects on access to reproductive care, reports of exaggerated reactions to this ruling are impacting other routine care (e.g., denying medical treatment that may affect pregnancy).
Electronic health records (EHRs) represent the major repository of confidential health information in the US. HIPAA, the Health Insurance Portability and Accountability Act, protects the confidentiality of a patient’s health information. Such records, however, can still be subject to release for certain purposes, including via subpoena for legal proceedings. Information about one’s health or health-seeking behavior obtained or stored by individuals or organizations that do not fall in the categories protected under HIPAA (e.g., healthcare apps, websites, search behavior, geo-tagged data about one’s location, etc.) are subject to even fewer protections, and can often be accessed more easily. Prosecutorial misuse of health data has grave consequences for the sanctity and trust inherent in the therapeutic relationship between patients and their healthcare practitioners. Violating this trust will cause immediate and future harm for all parties – not just those receiving care for reproductive health. A proactive, considered, and deliberate approach to safeguarding digital health data is a prerequisite to safe care for all.
In the wake of the Supreme Court’s overturning of Roe v. Wade and the current and ongoing actions from many state legislatures, ACMI seeks to ensure that privacy-protective policies governing the use of health and health-related information be put in place so that repercussions resulting from the Supreme Court decision do not impinge on the rights of individuals and on their relationships with the professionals they entrust with their care. Furthermore, ACMI is committed to mitigating the disparities in healthcare that will be exacerbated by this decision and to the provision of equal and safe healthcare to everyone.