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Recommendations to improve the patient experience and avoid bias when prenatal screening/testing.
Meredith, Stephanie; Brackett, Scotti; Diaz, Keith M; Freeman, Kathleen G; Huggins, Erin; Khan, Hadia; Leach, Mark W; Levitz, Mitchell; Michie, Marsha; Onufer, Janet; Skotko, Brian G; Smith, Leah; Nicole White, A; Waller, Tracy; Ayers, Kara.
Afiliação
  • Meredith S; Human Development Institute, University of Kentucky, USA. Electronic address: Stephanie.meredith@uky.edu.
  • Brackett S; Children's Mercy Hospital in Kansas City, MO, USA.
  • Diaz KM; Columbia University Medical Center, USA.
  • Freeman KG; New Jersey Regional Family Planning Council, USA.
  • Huggins E; Duke University School of Medicine, Department of Pediatrics, USA.
  • Khan H; Autism Society Greater Cincinnati, USA.
  • Leach MW; Human Development Institute, University of Kentucky, USA.
  • Levitz M; Human Development Institute, University of Kentucky, USA.
  • Michie M; CaseWestern Reserve School of Medicine, Department of Bioethics, USA.
  • Onufer J; The Boggs Center on Developmental Disabilities, Rutgers Robert Wood Johnson Medical School, USA.
  • Skotko BG; Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, USA; Department of Pediatrics, Harvard Medical School, USA.
  • Smith L; Center for Dignity in Healthcare for People with Disabilities, USA.
  • Nicole White A; Cincinnati Children's Hospital, USA.
  • Waller T; Kennedy Krieger Institute and Maryland Center for Developmental Disabilities, USA.
  • Ayers K; Cincinnati Children's Hospital, USA.
Disabil Health J ; 16(2): 101401, 2023 04.
Article em En | MEDLINE | ID: mdl-36463093
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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pessoas com Deficiência Tipo de estudo: Diagnostic_studies / Guideline / Screening_studies Limite: Female / Humans / Pregnancy Idioma: En Revista: Disabil Health J Assunto da revista: REABILITACAO / SAUDE PUBLICA / SERVICOS DE SAUDE Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pessoas com Deficiência Tipo de estudo: Diagnostic_studies / Guideline / Screening_studies Limite: Female / Humans / Pregnancy Idioma: En Revista: Disabil Health J Assunto da revista: REABILITACAO / SAUDE PUBLICA / SERVICOS DE SAUDE Ano de publicação: 2023 Tipo de documento: Article