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Full text release has been delayed at the author's request until May 01, 2027

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Navigating Options: Understanding Parental Decision-Making on Secondary Findings in NICU Whole Genome Sequencing to Enhance Healthcare Support

Boillat, Emelia
http://orcid.org/0009-0003-3203-3210
http://rave.ohiolink.edu/etdc/view?acc_num=ucin174766056749947

Abstract Details

2025, MS, University of Cincinnati, Medicine: Genetic Counseling.
The decision whether or not to receive Secondary Findings (SF) for pediatric patients undergoing whole genome sequencing (WGS) currently requires informed consent from parents. However, limited information is known about the factors influencing parental decisions regarding whether or not to learn SF for their child in the neonatal intensive care unit (NICU) specifically and how prepared parents feel making this decision. Through qualitative interviews, we explored how parents of NICU patients perceive what they have learned about SF in WGS, as well as strategies healthcare providers can employ to enhance parental decision-making support during the consenting process from the parents’ perspective. Insights gained from the study inform tailored approaches to counseling and support in the inpatient setting. Interviews were conducted with 20 families whose child had undergone WGS during their NICU stay at Cincinnati Children’s Hospital and Medical Center. Questions elicited reasons for receiving or denying SF for their child, what parents considered when making a choice about SF, and any improvements that could be made to SF consent in the NICU. Results from our study describe perceived advantages and disadvantages of SF, including ability to prepare for their child’s future and the general idea that more knowledge is better, while reasons for declining SF included more worry and limited access to life insurance. In addition, responses highlight that parents with a child in the NICU value the choice on SF, would like to learn about SF earlier in their diagnostic odyssey, and prefer more physical materials for learning about SF. Responses support the idea that parents of children in the NICU may have different values for SF reporting, and refute the idea that parents are in a state of information overload preventing them from considering SF. Parents often wanted more detailed information on SF, asserting that a tailored approach with inclusion of additional learning materials about SF should be considered.
Melanie Myers, Ph.D. (Committee Chair)
Farrah Jackson, M.S. (Committee Member)
Kimberly Widmeyer (formerly Lewis), MS (Committee Member)
47 p.
Genetics
Secondary Findings; Whole Genome Sequencing; Decision Making; NICU; Genetic Counseling; Informed Consent

Recommended Citations

Citations

  • Boillat, E. (2025). Navigating Options: Understanding Parental Decision-Making on Secondary Findings in NICU Whole Genome Sequencing to Enhance Healthcare Support [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin174766056749947

    APA Style (7th edition)

  • Boillat, Emelia. Navigating Options: Understanding Parental Decision-Making on Secondary Findings in NICU Whole Genome Sequencing to Enhance Healthcare Support. 2025. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin174766056749947.

    MLA Style (8th edition)

  • Boillat, Emelia. "Navigating Options: Understanding Parental Decision-Making on Secondary Findings in NICU Whole Genome Sequencing to Enhance Healthcare Support." Master's thesis, University of Cincinnati, 2025. http://rave.ohiolink.edu/etdc/view?acc_num=ucin174766056749947

    Chicago Manual of Style (17th edition)

ucin174766056749947
© 2025, all rights reserved.
This open access ETD is published by University of Cincinnati and OhioLINK.
Release 3.2.12