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The Role of Inheritance Knowledge in Reproductive Decision Making Among Young Adults with Osteogenesis Imperfecta

Baird, Leanne
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1649768998553912

Abstract Details

2022, MS, University of Cincinnati, Medicine: Genetic Counseling.
Osteogenesis Imperfecta (OI) is a genetic condition classified into 12 types based on the gene affected and the expressed clinical symptoms within an individual. Research indicates that young adults with genetic conditions may lack genetic literacy regarding their personal/familial condition, which may be a result of parents being their reported primary genetic information source. Individuals with a genetic condition often heavily weigh the heritability of their condition when deciding to have children, resulting in many couples forgoing biological parenthood. This study aims to evaluate the level of OI inheritance knowledge in 18–25-year-olds diagnosed with an autosomal dominant OI type (type 1, 2, 3, 4, 5) or an unknown OI type, determine from who and when inheritance information is learned, and to investigate the role of OI inheritance in future reproductive decisions. An author developed questionnaire was distributed through the OI Foundation and OI Federation of Europe newsletters, research blasts, and social media pages, resulting in 105 individuals meeting inclusion criteria and completing at least half of the questionnaire. Findings indicate good basic OI inheritance knowledge. However, gaps in inhertiance knowledge were captured, and this population seems to have difficulties applying basic inheritance knowledge to real life situations. Parents are the primary, reliable information source and are educating their children when they are school aged. OI inheritance plays a very important role in reproductive decisions, leading to an interest in prenatal diagnostic testing and IVF with PGT-M. As inheritance knowledge increases, interest in prenatal diagnostic testing decreases, and interest in IVF with PGT-M trends towards increasing. This study allows providers to determine genetic topics needing increased education and how best to support and care for patients making difficult reproductive decisions in the OI community.
Melanie Myers, Ph.D. (Committee Member)
Nichole Nidey, Ph.D. (Committee Member)
Jodie Johnson, M.S. C.G.C. (Committee Member)
Kara Ayers, Ph.D. (Committee Member)
41 p.
Genetics
Osteogenesis Imperfecta; OI; Inheritance; Genetic Literacy; Reproductive decision making; Information source

Recommended Citations

Citations

  • Baird, L. (2022). The Role of Inheritance Knowledge in Reproductive Decision Making Among Young Adults with Osteogenesis Imperfecta [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1649768998553912

    APA Style (7th edition)

  • Baird, Leanne. The Role of Inheritance Knowledge in Reproductive Decision Making Among Young Adults with Osteogenesis Imperfecta. 2022. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1649768998553912.

    MLA Style (8th edition)

  • Baird, Leanne. "The Role of Inheritance Knowledge in Reproductive Decision Making Among Young Adults with Osteogenesis Imperfecta." Master's thesis, University of Cincinnati, 2022. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1649768998553912

    Chicago Manual of Style (17th edition)

ucin1649768998553912
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This open access ETD is published by University of Cincinnati and OhioLINK.