I am pleased to share that the AMIA Board has voted to endorse the American College of Medical Informatics (ACMI) position statement on the recent Dobbs v. Jackson Women's Health Organization Supreme Court Ruling, with minor modifications, as an AMIA position statement, which is available below. I am grateful for the passion and engagement of the AMIA community over the last week, the leadership of ACMI, and your patience, as AMIA leadership took time to elicit input for a formal statement from key AMIA leaders and stakeholders, including the AMIA Ethics Committee; Women in AMIA; the Diversity Equity and Inclusion (DEI) Committee; and our clinician group leaders including Physicians in AMIA (PINA) and Nursing Informatics Working Group (NIWG), among others.
AMIA is committed to supporting human rights and fostering a safe and inclusive environment for all its members, especially those who might be directly affected by this decision, including women, all individuals with reproductive capacity, and providers who deliver healthcare. We will be reviewing the implications and options for all future meeting venues, and we will hold a town hall / listening session in the coming weeks to inform our next steps, including, but not limited to, policy and advocacy. I look forward to working with you to leverage the unique skills of the AMIA informatics community to protect autonomy, privacy, trust, and equity in healthcare delivery.
AMIA Statement on Dobbs vs. Jackson Women's Health Organization Supreme Court Decision
The Supreme Court’s recent ruling overturning Roe v. Wade has far-reaching effects for human rights, healthcare, and society. The American Medical Informatics Association (AMIA) 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 and health information technology to investigate and prosecute individuals who can get pregnant and healthcare professionals.
AMIA 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. AMIA is also deeply concerned about the likely disproportionate impact this decision will have on patients already suffering from disparities in American health care – including women, people with low incomes, those living in rural settings, the BIPOC (Black, Indigenous, and people of color) and the LGBTQA+ communities. 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) 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 and fiduciary relationship between patients and their healthcare providers. Violating this trust will cause immediate and future harm for all parties and their families – 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, AMIA 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, AMIA is committed to mitigating the disparities in healthcare that will be exacerbated by this decision and promoting equitable and safe healthcare to everyone.