Should a Genomic Diagnosis be a Ticket or a Roadmap? Threats to Equity in the Pursuit of Developmental Services in Early Childhood.

A genomic diagnosis for a young child could guide access to developmental care, school services, and social supports; yet these contexts remain understudied. Here we describe (at least) two ways a genomic diagnosis could promote such utility: as a ticket, where the diagnosis qualifies a child for se...

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Publicado en:American Journal of Bioethics Vol. 25; no. 12; pp. 32 - 41
Autores principales: MacDuffie, Katherine E., Ackerman, Sara L., Cadigan, R. Jean, Goldenberg, Aaron J., Lemke, Amy A., McNamera, Katelyn C., Reynolds, Elizabeth, Yu, Joon-Ho, Brothers, Kyle B.
Formato: Journal Article
Publicado: Taylor & Francis Ltd Dec2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Dec2025
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      pub: Taylor & Francis Ltd
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        atl: Should a Genomic Diagnosis be a Ticket or a Roadmap? Threats to Equity in the Pursuit of Developmental Services in Early Childhood.
      aug:
        au:
          MacDuffie, Katherine E.
          Ackerman, Sara L.
          Cadigan, R. Jean
          Goldenberg, Aaron J.
          Lemke, Amy A.
          McNamera, Katelyn C.
          Reynolds, Elizabeth
          Yu, Joon-Ho
          Brothers, Kyle B.
        affil: Seattle Children's Research Institute
      sug:
        subj:
          Genomics
          Genetic Screening
          Child Development
          Child Health Services
          Health Services Accessibility
          Support, Social
          Healthcare Disparities
          Early Childhood Intervention
          Transitional Programs
          Education, Special
      ab: A genomic diagnosis for a young child could guide access to developmental care, school services, and social supports; yet these contexts remain understudied. Here we describe (at least) two ways a genomic diagnosis could promote such utility: as a ticket, where the diagnosis qualifies a child for services they weren't previously able to access, or as a roadmap, where the diagnosis guides which services might be helpful. We explore the implications of a diagnosis that functions as either a ticket or a roadmap, including how either might create additional disparities in the US developmental services system. We argue that fewer inequities would exist in a world where a genomic diagnosis functions more as a roadmap than a ticket. We recommend policy changes (increase early intervention funding, improve family navigation, and incentivize developmental services research) that can avoid the inequities associated with the "ticket" and move us towards a "roadmap" future.
      pubtype: Academic Journal
      doctype: Journal Article
      ougenre: Article
    language: English
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