The Perception of Disability in Prenatal Genetic Screening and Counseling: An Ethical Analysis of Current Practice
Ethical Legal Social Issues (ELSI) Public Health and Policy
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Introduction:
Prenatal Genetic Screening (PGS), while offering parents insights into potential genetic conditions, has the potential to inadvertently perpetuate ableism by framing disability as something to be avoided. Disability scholars emphasize the importance of recognizing the value of all bodies and experiences, arguing against a societal narrative that devalues disabled lives. The practice of PGS can imply that lives with disabilities are less worthy, fostering stigma and discrimination against disabled individuals despite the worthwhile goal of giving parents more information prior to birth. This analysis argues for a critical reassessment of prenatal genetic screening practices to promote a culture of acceptance, recognizing that disability is an integral part of human diversity and should not be treated as a deficiency.
Methods:
Ethical analysis based on literature review of current research regarding prenatal genetic counseling as it pertains to representation of disability and writings from disability justice scholars on prenatal genetic screening and counseling practices.
Results:
Research shows that counseling following positive screening and confirmatory testing plays a key role in decision making on whether to continue pregnancy particularly through perceived knowledge of providers and directive counseling (Jeon et al. 2012). In many areas, this counseling is done by OBGYNs rather than pediatricians or clinical geneticists who have more experience caring for the patient population. As a result, parents are often presented with outdated information regarding potential prognosis, quality of life, and available treatments (Liehr 2021). Disability scholars, like Sins Invalid, have pointed out inherent ableism in this practice, as those with disabilities consistently rate their quality of life higher than their providers (Rubeis et al. 2019). Families of children with disabilities have also described encounters with providers as overly negative, with emphasis on poor quality of life and physical limitations rather than potential for interaction with family or other positive quality of life measures (Miu Yung Ngan et al. 2020). Families express a desire to define quality of life for themselves rather than have providers define it for them and their children (Miu Yung Ngan et al. 2020).
When providers themselves were surveyed on their own views around counseling patients on termination following positive diagnosis, the results overwhelmingly showed a desire to present an acceptable opinion on termination (Crowe et al. 2018). Most providers expressed a desire to give parents an accurate picture of what life would look like using a deficit-based view of physical limitations they would live with (Crowe et al. 2018). Uncertainty about how to counsel was also complicated by the lack of standardized best practice guidelines for counseling patients with positive prenatal genetic screenings (Crowe et al. 2018). None of the studies showed that providers had an intention of pushing ableist notions onto patients.
Conclusion:
Combined this data illustrates a mismatch in provider intent versus impact. Providers show a desire to help prepare families but inadverently may fall into the trap of perpetuating a negative view of disability which can harm relationships with families who opt for continutation over termination. In both cases, families deserve support to decide what quality of life is acceptable for their children and their families. Standardizing practices and incorporating voices of disability scholars would help improve this support and give a more wholistic viewpoint of disability to guide shared decision making.
Prenatal Genetic Screening (PGS), while offering parents insights into potential genetic conditions, has the potential to inadvertently perpetuate ableism by framing disability as something to be avoided. Disability scholars emphasize the importance of recognizing the value of all bodies and experiences, arguing against a societal narrative that devalues disabled lives. The practice of PGS can imply that lives with disabilities are less worthy, fostering stigma and discrimination against disabled individuals despite the worthwhile goal of giving parents more information prior to birth. This analysis argues for a critical reassessment of prenatal genetic screening practices to promote a culture of acceptance, recognizing that disability is an integral part of human diversity and should not be treated as a deficiency.
Methods:
Ethical analysis based on literature review of current research regarding prenatal genetic counseling as it pertains to representation of disability and writings from disability justice scholars on prenatal genetic screening and counseling practices.
Results:
Research shows that counseling following positive screening and confirmatory testing plays a key role in decision making on whether to continue pregnancy particularly through perceived knowledge of providers and directive counseling (Jeon et al. 2012). In many areas, this counseling is done by OBGYNs rather than pediatricians or clinical geneticists who have more experience caring for the patient population. As a result, parents are often presented with outdated information regarding potential prognosis, quality of life, and available treatments (Liehr 2021). Disability scholars, like Sins Invalid, have pointed out inherent ableism in this practice, as those with disabilities consistently rate their quality of life higher than their providers (Rubeis et al. 2019). Families of children with disabilities have also described encounters with providers as overly negative, with emphasis on poor quality of life and physical limitations rather than potential for interaction with family or other positive quality of life measures (Miu Yung Ngan et al. 2020). Families express a desire to define quality of life for themselves rather than have providers define it for them and their children (Miu Yung Ngan et al. 2020).
When providers themselves were surveyed on their own views around counseling patients on termination following positive diagnosis, the results overwhelmingly showed a desire to present an acceptable opinion on termination (Crowe et al. 2018). Most providers expressed a desire to give parents an accurate picture of what life would look like using a deficit-based view of physical limitations they would live with (Crowe et al. 2018). Uncertainty about how to counsel was also complicated by the lack of standardized best practice guidelines for counseling patients with positive prenatal genetic screenings (Crowe et al. 2018). None of the studies showed that providers had an intention of pushing ableist notions onto patients.
Conclusion:
Combined this data illustrates a mismatch in provider intent versus impact. Providers show a desire to help prepare families but inadverently may fall into the trap of perpetuating a negative view of disability which can harm relationships with families who opt for continutation over termination. In both cases, families deserve support to decide what quality of life is acceptable for their children and their families. Standardizing practices and incorporating voices of disability scholars would help improve this support and give a more wholistic viewpoint of disability to guide shared decision making.