We are excited to share with you our new manuscript (“Recommendations to improve the patient experience and avoid bias when prenatal screening/testing”) in Disability and Health Journal. Our multidisciplinary team of advisors for the Center for Dignity in Healthcare for People with Disabilities worked for over two years on this article to give recommendations to medical providers and organizations, federal agencies, advocacy organizations, labs, and other stakeholders about how to administer prenatal screening in a way that is more equitable to people with disabilities. This work was funded by the Department of Health and Human Services Administration for Community Living.
Here’s what we covered:
- Prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information.
- Expectant parents are more likely to describe the diagnosis experience as negative than positive.
- The conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities.
- Our interdisciplinary committee—including people with disabilities, disability organization leaders, healthcare professionals, and bioethicists—reviewed selected published literature comparing the current state of administration of prenatal testing to the ideal state.
- Our committee then created 20 recommendations on how to create better patient experiences around prenatal testing/screening.
- We hope that these recommendations could be helpful for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders.
Attached is a copy of the publication, which can also be found on Elsevier for free until January 19. You can also access the public and Easy Read versions here: https://centerfordignity.com/prenatal-diagnosis-subcommittee/
Please feel free to share this work with others who might be interested.