Author ORCID Identifier

https://orcid.org/0000-0003-1616-7764

Date of Graduation

5-2018

Document Type

Thesis (MS)

Program Affiliation

Genetic Counseling

Degree Name

Masters of Science (MS)

Advisor/Committee Chair

Sarah Bannon, MS

Committee Member

Courtney DiNardo, MD, MS

Committee Member

Guadalupe Palos, DrPH

Committee Member

Sarah Noblin, MS

Committee Member

Molly Daniels, MS

Abstract

Although inherited predispositions to hematologic malignancies have previously been considered extremely rare, approximately 12 causative genes have been implicated in the last decade. Since individuals diagnosed with leukemia have not historically been considered for evaluation of inherited predispositions, genetic testing is underperformed in this population. This study used focus group discussions to explore the attitudes, motivations, and barriers to genetic testing for 23 patients with leukemia. Participants generally exhibited a positive regard for the utility of genetic testing, and were primarily motivated by concern for their family and a sense of altruism toward all leukemia patients. While drawbacks and barriers were difficult for participants to identify, a few individuals cited concerns about confidentiality of genetic information and possible discrimination based on test results. Participants unanimously agreed that the skin punch biopsy required for genetic testing in leukemia patients would not deter their decision to be tested. The findings from this study are valuable for guiding genetic counseling that best meets the specific needs of leukemia patients, and future studies will analyze how these issues are perceived by a larger and more diverse population of individuals with leukemia.

Keywords

genetic counseling, genetic testing, leukemia, hereditary, inherited, focus group, patient attitudes, hematologic malignancies

Available for download on Saturday, May 04, 2019

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