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Recommendations to improve the patient experience and avoid bias when prenatal screening/testing
Stephanie Meredith1, Scotti Brackett2, Keith M Diaz3
1Human Development Institute, University of Kentucky, USA.
Disability and Health Journal
|December 3, 2022
Summary
Prenatal screening experiences are often negative, sometimes showing bias against disabilities. Recommendations aim to improve patient care, training, policies, and research for better genetic testing outcomes.
Area of Science:
- Medical Genetics
- Public Health
- Bioethics
Background:
- Prenatal screening and testing have expanded, offering more genetic information.
- However, expectant parents frequently report negative experiences with prenatal diagnosis.
- Conversations during these experiences can reveal unconscious bias against individuals with disabilities.
Purpose of the Study:
- To compare the current administration of prenatal testing with an ideal state.
- To develop recommendations for improving the prenatal testing experience and outcomes.
- To address issues of bias and patient dissatisfaction in genetic screening.
Main Methods:
- An interdisciplinary committee of experts, including individuals with disabilities, reviewed literature.
- The review compared the current practices of prenatal testing administration to an ideal state.
- Expert consensus was used to formulate recommendations.
Main Results:
- A gap exists between the current and ideal administration of prenatal screening and testing.
- Identified issues include negative patient experiences and unconscious bias.
- Recommendations were developed for various stakeholders.
Conclusions:
- Improving prenatal screening and testing requires a multi-faceted approach.
- Recommendations focus on enhancing patient experiences, professional training, policy development, and research.
- Addressing bias and ensuring equitable care are critical for better genetic testing outcomes.
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