Literature DB >> 30448267

A behavior-theoretic evaluation of values clarification on parental beliefs and intentions toward genomic sequencing for newborns.

Ryan S Paquin1, Susana Peinado2, Megan A Lewis2, Barbara B Biesecker2, Christine Rini3, Myra Roche4, Rita M Butterfield4, Cynthia M Powell4, Jonathan S Berg4, Donald B Bailey2.   

Abstract

Decision aids commonly include values clarification exercises to help people consider which aspects of a choice matter most to them, and to help them make decisions that are congruent with their personal values and preferences. Using a randomized online experiment, we examined the influence of values clarification on parental beliefs and intentions about having genomic sequencing for newborns. We recruited 1186 women and men ages 18-44 who were pregnant or whose partner was pregnant or planning to become pregnant in the next two years. Participants (N = 1000) completed one of two versions of an online decision aid developed as part of a larger project examining the technical, clinical, and social aspects of using exome sequencing to screen newborns for rare genetic conditions. The education-only version provided information about using genomic sequencing to screen newborns for medically treatable conditions. The education-plus-values-clarification version included the same information, along with a values clarification exercise in which participants classified as important or unimportant five reasons in support of having and five reasons against having their newborn undergo genomic sequencing. We conducted partial correlations, regression analysis, and MANCOVAs with sex, health literacy, and experience with genetic testing as covariates. Participants who completed the decision aid with the values clarification exercise agreed less strongly with four of the five statements against sequencing compared to participants who viewed the education-only decision aid. The groups did not differ on agreement with reasons in support of sequencing. Agreement with four of five reasons against genomic sequencing was negatively associated with intentions to have their newborn sequenced, whereas agreement with all five reasons in support of sequencing were positively associated with intentions.
Copyright © 2018 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  Decision aids; Genomic sequencing; Informed choice; Newborn screening; Reasoned action; United States; Values clarification

Mesh:

Year:  2018        PMID: 30448267      PMCID: PMC6509013          DOI: 10.1016/j.socscimed.2018.11.017

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  21 in total

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Journal:  BMC Med Inform Decis Mak       Date:  2014-08-01       Impact factor: 2.796

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  6 in total

1.  Genomic Sequencing for Newborn Screening: Results of the NC NEXUS Project.

Authors:  Tamara S Roman; Stephanie B Crowley; Myra I Roche; Ann Katherine M Foreman; Julianne M O'Daniel; Bryce A Seifert; Kristy Lee; Alicia Brandt; Chelsea Gustafson; Daniela M DeCristo; Natasha T Strande; Lori Ramkissoon; Laura V Milko; Phillips Owen; Sayanty Roy; Mai Xiong; Ryan S Paquin; Rita M Butterfield; Megan A Lewis; Katherine J Souris; Donald B Bailey; Christine Rini; Jessica K Booker; Bradford C Powell; Karen E Weck; Cynthia M Powell; Jonathan S Berg
Journal:  Am J Hum Genet       Date:  2020-08-26       Impact factor: 11.025

2.  Values clarification and parental decision making about newborn genomic sequencing.

Authors:  Susana Peinado; Ryan S Paquin; Christine Rini; Myra Roche; Rita M Butterfield; Jonathan S Berg; Cynthia M Powell; Donald B Bailey; Megan A Lewis
Journal:  Health Psychol       Date:  2019-12-30       Impact factor: 4.267

3.  The impact of the number of tests presented and a provider recommendation on decisions about genetic testing for cancer risk.

Authors:  Marci L B Schwartz; William M P Klein; Lori A H Erby; Christy H Smith; Debra L Roter
Journal:  Patient Educ Couns       Date:  2020-09-18

4.  Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis.

Authors:  Holly O Witteman; Ruth Ndjaboue; Gratianne Vaisson; Selma Chipenda Dansokho; Bob Arnold; John F P Bridges; Sandrine Comeau; Angela Fagerlin; Teresa Gavaruzzi; Melina Marcoux; Arwen Pieterse; Michael Pignone; Thierry Provencher; Charles Racine; Dean Regier; Charlotte Rochefort-Brihay; Praveen Thokala; Marieke Weernink; Douglas B White; Celia E Wills; Jesse Jansen
Journal:  Med Decis Making       Date:  2021-10       Impact factor: 2.583

5.  Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population.

Authors:  Sabrina N Powell; Grace Byfield; Ashley Bennetone; Annabelle M Frantz; Langston K Harrison; Erin R James-Crook; Heather Osborne; Thomas H Owens; Jonathan L Shaw; Julianne O'Daniel; Laura V Milko
Journal:  Front Genet       Date:  2022-03-25       Impact factor: 4.772

6.  Principles of Genomic Newborn Screening Programs: A Systematic Review.

Authors:  Lilian Downie; Jane Halliday; Sharon Lewis; David J Amor
Journal:  JAMA Netw Open       Date:  2021-07-01
  6 in total

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