Commentary
Recommendations to improve the patient experience and avoid bias when prenatal screening/testing

https://doi.org/10.1016/j.dhjo.2022.101401Get rights and content

Abstract

While 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. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.

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.

References (29)

  • T. Carlsson et al.

    Experiences of informational needs and received information following a prenatal diagnosis of congenital heart defect: experiences following a prenatal diagnosis of congenital heart defect

    Prenat Diagn

    (2016)
  • PRENATAL LAWS: Down Syndrome Information Acts

  • K.B. Sheets et al.

    Balanced information about Down syndrome: what is essential?

    Am J Med Genet A

    (2011)
  • B.G. Skotko et al.

    Self-perceptions from people with Down syndrome

    Am J Med Genet A

    (2011)
  • Cited by (5)

    #

    All of the listed authors were part of the Prenatal Subcommittee of the Center for Dignity in Healthcare for People with Disabilities.

    View full text