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Motivations for pursuing genetic counseling to explore the availability of panel genetic testing: a pilot study
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Gerber, Jessalyn. Motivations for pursuing genetic counseling to explore the availability of panel genetic testing: a pilot study. Retrieved from https://doi.org/doi:10.7282/t3-zb2z-2t43

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TitleMotivations for pursuing genetic counseling to explore the availability of panel genetic testing: a pilot study
NameGerber, Jessalyn (author); Joines, Jessica (chair); Grumet, Sherry (outside member); McDaniels, Brianna (outside member); D'Elia, Sandra (outside member); Rutgers University; School of Graduate Studies
Date Created2020
Other Date2020-05 (degree)
SubjectUpdated testing, Microbiology and Molecular Genetics
Extent1 online resource (v, 33 pages)
DescriptionLittle is known about the factors that motivate or deter patients from pursuing updated genetic testing after previously receiving negative or uncertain results. The purpose of this study was to investigate which factors influenced patients’ decisions to either accept or decline the invitation to return to the genetic counseling clinic to discuss updated genetic testing for breast and ovarian cancer. Four hundred forty-six individuals who had previously tested negative or had a variant of uncertain significance in BRCA1 or BRCA2 were mailed a letter informing them of the availability of breast cancer gene panels and inviting them to schedule an appointment with a cancer genetic counselor to discuss updated testing options. Patients who returned were asked to complete a survey about what motivated them to return, and patients who declined were given the opportunity to complete a survey detailing their reasons for declining. The response rate to the letter was 7.83% when we include all patients who returned for testing as well as patients who responded to the survey for those not returning for updated testing. The surveys on motivations and deterrents required the patients to rate six different factors from 1 (not important) to 5 (very important) in their decision to return or not return for genetic counseling. In addition, patients were able to rank those factors from most important to least important in their decision. Patients were also given the opportunity to write-in other factors that may have influenced their decision. We discovered that the factors that most influenced patients to return were a desire to learn information for their family members and a desire to aid their own health. The main reasons patients declined the invitation were a perceived lack of benefit of updated testing and concerns about the cost of testing. This data provides valuable insight into the factors that motivate and deter patients to consider updated genetic testing and can shape how clinicians inform their patients about expanded genetic testing options.
NoteM.S.
NoteIncludes bibliographical references
Genretheses, ETD graduate
Persistent URLhttps://doi.org/doi:10.7282/t3-zb2z-2t43
LanguageEnglish
CollectionSchool of Graduate Studies Electronic Theses and Dissertations
Organization NameRutgers, The State University of New Jersey
RightsThe author owns the copyright to this work.
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