Federal report examines prenatal interventions through lens of people with disabilities whose lives are directly affected

For Immediate Release

June 5, 2024

WASHINGTON–Today, the National Council on Disability (NCD) released a first-of-its-kind federal report where people with certain genetic and heritable disabilities speak for themselves about the current and potential impacts of prenatal interventions on the disability community.

NCD’s From Fetal Surgery to Gene Editing: The Current and Potential Impact of Prenatal Interventions on People with Disabilities explores the potential for disparate harm from some technologies and the need for equitable access to others and offers findings and recommendations for the Administration, Congress, and states to ensure any prenatal interventions do not disproportionately harm people with disabilities as a historically marginalized population.

Prenatal interventions include a variety of technologies and applications ranging from prenatal screening, which is used in 72 percent of four million pregnancies in the United States each year, to fetal surgery, which is used to repair specific medical issues associated with conditions like spina bifida, to heritable human genome editing or human germline genome editing, which is not explicitly permitted in any county and is explicitly prohibited in 75 countries. These technologies carry unique practical, ethical, and disability rights implications and require guidance from policy experts, scientists, medical providers, disability and social justice advocates, researchers, bioethicists, and others. Despite the valuable insight that people with the conditions that would be targeted can offer, NCD found they have historically been excluded from determining research and funding priorities and from drafting policies and guidelines for prenatal technologies.

“Today’s report elevates the voices of people with lived experience with the very disabilities that prenatal interventions seek to address – disabilities like mine – and hears directly from them about their concerns,” said NCD Vice Chair Emily Voorde.

“This and related findings underscore our recommendation to require disability cultural competency training and curriculum for the allied health professions as outlined in the Council’s Framework to End Health Disparities,” said NCD Chair Claudia Gordon.

NCD’s key findings include:

• The majority of patients are not receiving accurate, up-to-date information at
• the moment of diagnosis and the way the information is presented often causes lasting trauma.
• Marketing incentives for adopting prenatal technologies are often steeped in the perpetuation of stereotypes and fears about disabilities.
• Lack of regulation of commercial prenatal testing has led to widespread confusion about the accuracy of tests among patients and providers.
• The forward momentum of technologies surrounding prenatal interventions without the necessary education, ethics, and governance is traumatizing patients, fostering bias against people with disabilities, and creating systems inequities.

From Fetal Surgery to Gene Editing makes extensive recommendations to federal and state policymakers on how to responsibly consider, research, and regulate these interventions.

Read this and all of NCD’s reports at NCD.gov.