CommentaryRecommendations to improve the patient experience and avoid bias when prenatal screening/testing
Section snippets
Process
With the expansion of prenatal screening, healthcare professionals are increasingly called upon to meet complex patient informational needs, preserve patient autonomy in decision-making, and avoid bias against people with disabilities as a historically marginalized population.13,14 Therefore, these recommendations aim to improve the patient experience while also promoting equity toward people with disabilities in the administration of prenatal screening/testing. Although existing prenatal
Create better patient experiences
Recommendation 1: Discuss with expectant parents the potential medical issues associated with prenatally-diagnosed conditions and also the broader spectrum of life outcomes for people with prenatally diagnosed conditions (including physical, developmental, educational and psychosocial outcomes, life expectancy, clinical course and intellectual and functional development, and treatment options).18
This approach underscores both the social and medical models of disability as described above. To
Conclusion
Moving into a future where prenatal testing continues to expand, reproductive rights are in flux, and people with disabilities are leading social justice movements, these concepts are running into a collision course unless the medical and advocacy communities thoughtfully engage on how to best support expectant parents learning about a prenatal diagnosis. These recommendations—created with input from people with disabilities, family members, disability organization leaders, healthcare and
Acknowledgments
These recommendations were collaboratively developed with equal input by the interdisciplinary Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities.
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2023, American Journal of Bioethics
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All of the listed authors were part of the Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities.