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

Meredith, Stephanie; Brackett, Scotti; Diaz, Keith M.; Freeman, Kathleen; Huggins, Erin; Kahn, Hadia; W.Leach, Mark; Mitchell, Levitz; Michie, Marsha; Onufer, Janet; Skotko, Brian G.; Smith, Lisa F.; White, A. Nicole; Waller, Tracy; Kara, Ayers

doi:10.1016/j.dhjo.2022.101401

Cited by 6 publications

(4 citation statements)

References 23 publications

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“…Laboratories offering prenatal genetic testing have not historically offered commensurate support to organizations for parents receiving this information, either financially or even through informational referrals (Skotko et al 2019;Meredith et al 2016;Leach 2015). Our work sheds additional light on the ethical implications of the widespread offer of prenatal genetic screening without sufficient attention to and funding for post-screening support, which has been noted in other literature (Michie 2020;Meredith et al 2022). Future research is also needed to more fully understand the ways that healthcare providers and PAGs interact, sometimes with mistrust and at other times with productive collaboration (Edwards and Ferrante 2009).…”

Section: Prenatal Support For Familiesmentioning

confidence: 64%

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

et al. 2023

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A rapid increase in the reach and breadth of prenatal genetic screening and testing has led to an expanding need for prenatal support of families receiving this genetic information. As part of a larger study investigating prenatal preparation for a child with a genetic condition, we interviewed representatives of patient advocacy groups (PAGs) who support parents postdiagnosis. Groups supporting families with Down syndrome were often local or regional, while other groups were often national or international in scope. Groups varied in their willingness or ability to support families prior to making a pregnancy continuation decision, and participants reflected on ways they addressed these needs with individual counseling and referrals, if needed. Participants described supporting parents with information about conditions and a range of lived experiences for families, while referring families to healthcare professionals for technical questions and additional medical needs. PAGs also prioritized connecting parents experiencing a new diagnosis with other families for peer support and community-building, both in person and on social media. Participants discussed limitations, such as a lack of racially-concordant support, ability to offer resources in languages other than English, and a lack of funding to meet the expressed needs of families post-diagnosis. Overall, participants emphasized that the parenting experience of each child is unique, irrespective of a genetic diagnosis, an experience for which parents can never be "totally prepared."

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Section: Prenatal Support For Familiesmentioning

confidence: 64%

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

et al. 2023

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“…Objective, value-neutral language is recommended to describe neurodevelopmental outcomes. This allows for families to derive their own meaning and to make decisions based on their values, rather than taking on medical biases [26][27][28][29][30].…”

Section: Recommendationsmentioning

confidence: 99%

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families

Church,

Dahan,

Rule

et al. 2024

Children

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The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

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“…87 Critiques of genetic testing and genetic counseling often relate to reproductive settings, and recent work has provided best practices for avoiding ableism in delivering genetic diagnoses. 88 While much of this work focuses on Down syndrome, recommendations can be applied in the context of autism and other neurodevelopmental traits and disabilities. 88 Importantly, as the use of genetic information continues to increasingly influence clinical and reproductive decision-making, researchers and clinicians must work in collaboration with the autistic community and other AIPs to develop an equitable research and health care enterprise.…”

Section: Considerations Regarding Clinical Translation and Genetic Te...mentioning

confidence: 99%

“…88 While much of this work focuses on Down syndrome, recommendations can be applied in the context of autism and other neurodevelopmental traits and disabilities. 88 Importantly, as the use of genetic information continues to increasingly influence clinical and reproductive decision-making, researchers and clinicians must work in collaboration with the autistic community and other AIPs to develop an equitable research and health care enterprise. To this end, it is necessary to adopt a broader view of autism and autistic individuals' health care needs, with an increased focus on physical health problems that have so far received limited attention.…”

Section: Considerations Regarding Clinical Translation and Genetic Te...mentioning

confidence: 99%

Ethical challenges in autism genomics: Recommendations for researchers

Natri,

Chapman,

Heraty

et al. 2023

European Journal of Medical Genetics

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

Cited by 6 publications

References 23 publications

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

Never “totally prepared”: Support groups on helping families prepare for a child with a genetic condition

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families

Ethical challenges in autism genomics: Recommendations for researchers

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