Clinical Utility of Expanded Carrier Screening: Reproductive Behaviors of At-Risk Couples.

Expanded carrier screening (ECS) analyzes dozens or hundreds of recessive genes to determine reproductive risk. Data on the clinical utility of screening conditions beyond professional guidelines are scarce. Individuals underwent ECS for up to 110 genes. Five-hundred thirty-seven at-risk couples (AR...

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Published in:Journal of Genetic Counseling Vol. 27; no. 3; pp. 616 - 626
Main Authors: Ghiossi, Caroline E., Goldberg, James D., Haque, Imran S., Lazarin, Gabriel A., Wong, Kenny K.
Format: research tables/charts Journal Article
Published: Wiley-Blackwell Jun2018
Online Access:View this record in EBSCOhost
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      dt: Jun2018
      vid: 27
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        10.1007/s10897-017-0160-1
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        atl: Clinical Utility of Expanded Carrier Screening: Reproductive Behaviors of At-Risk Couples.
      aug:
        au:
          Ghiossi, Caroline E.
          Goldberg, James D.
          Haque, Imran S.
          Lazarin, Gabriel A.
          Wong, Kenny K.
        affil: California State University Stanislaus, 1 University Cir, 95382, Turlock, CA, USA
      sug:
        subj:
          Genetic Screening Utilization
          Reproduction Psychosocial Factors
          Spouses Psychosocial Factors
          Surveys
          Human
          Decision Making, Clinical
          Prenatal Diagnosis
          Preimplantation Diagnosis
          Fertilization in Vitro
          Amniocentesis
          Severity of Illness
          Genes, Recessive
      ab: Expanded carrier screening (ECS) analyzes dozens or hundreds of recessive genes to determine reproductive risk. Data on the clinical utility of screening conditions beyond professional guidelines are scarce. Individuals underwent ECS for up to 110 genes. Five-hundred thirty-seven at-risk couples (ARC), those in which both partners carry the same recessive disease, were invited to participate in a retrospective IRB-approved survey of their reproductive decision making after receiving ECS results. Sixty-four eligible ARC completed the survey. Of 45 respondents screened preconceptionally, 62% (<italic>n</italic> = 28) planned IVF with PGD or prenatal diagnosis (PNDx) in future pregnancies. Twenty-nine percent (<italic>n</italic> = 13) were not planning to alter reproductive decisions. The remaining 9% (<italic>n</italic> = 4) of responses were unclear. Of 19 pregnant respondents, 42% (<italic>n</italic> = 8) elected PNDx, 11% (<italic>n</italic> = 2) planned amniocentesis but miscarried, and 47% (<italic>n</italic> = 9) considered the condition insufficiently severe to warrant invasive testing. Of the 8 pregnancies that underwent PNDx, 5 were unaffected and 3 were affected. Two of 3 affected pregnancies were terminated. Disease severity was found to have significant association (<italic>p</italic> = 0.000145) with changes in decision making, whereas guideline status of diseases, controlled for severity, was not (<italic>p</italic> = 0.284). Most ARC altered reproductive planning, demonstrating the clinical utility of ECS. Severity of conditions factored into decision making.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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