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Understanding The Beliefs of Ashkenazi Jewish Individuals Regarding Cancer Genetic Counseling Services

Pearlman, Rachel S. (2012) Understanding The Beliefs of Ashkenazi Jewish Individuals Regarding Cancer Genetic Counseling Services. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Hereditary Breast and Ovarian Cancer Syndrome (HBOC) is caused by BRCA1/2 gene mutations. BRCA1/2 mutations are observed in 1 in 800 in the non-Ashkenazi Jewish population, while an individual of Ashkenazi Jewish (AJ) ancestry has an a priori risk of 1 in 40. This pilot study was designed to document common beliefs about cancer genetics services (CGS) and to identify the preferred methods of communication regarding cancer risks and inherited cancer predispositions to the AJ population. Participants were recruited on a voluntary basis from the Jewish community of Pittsburgh, PA to participate in an informal information session about cancer genetics at a local synagogue. Sixteen participants completed surveys with questions pertaining to basic genetics knowledge and beliefs regarding inherited cancer risks, genetic counseling and genetic testing for HBOC before and after the information session, thus allowing researchers to identify changes in genetic knowledge, as well as differences in perceptions about cancer genetics and CGS. Findings revealed that the main motivation to pursue CGS is if an individual perceives they are at a high-risk status to develop cancer based on personal or family history of cancer. The data shows that AJ individuals are aware of cancer genetics and risks associated with their ancestry, but do not pursue or participate in CGS due to a perception of lacking knowledge about general cancer genetics. Although 56.25% of respondents reported that their health care providers are not aware of their AJ ancestry, 75% reported that they preferred to learn of cancer genetics information and CGS through a healthcare provider or physician. Between the pre- and post-information session surveys, analysis of the knowledge-based questions showed that the average correct response rate for every question increased (77% to 94%). The results of this study have important public health implications because they encourage the idea that a future preferred service delivery model for AJ population-specific genetic counseling may include informal community-based cancer genetics information sessions prior to traditional genetic counseling, thus allowing traditional counseling to focus on personalized risk assessment, benefits and limitations of testing, and potential psychosocial issues that are unique to each individual or family.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Pearlman, Rachel S.rsp23@pitt.eduRSP23
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairGettig, Elizabeth A.bgettig@pitt.eduBGETTIG
Committee MemberMarshall, Megan L.MMARSHA2@wpahs.org
Committee MemberSolomon, Sheila R.solomonsr@upmc.edu
Committee MemberGollin, Susanne M.gollin@pitt.eduGOLLIN
Committee MemberTrauth, Jeanette M.trauth@pitt.eduTRAUTH
Committee MemberHertz, Amy B.hertz@rodefshalom.org
Date: 2 July 2012
Date Type: Publication
Defense Date: 30 March 2012
Approval Date: 2 July 2012
Submission Date: 18 April 2012
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 127
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Hereditary Breast and Ovarian Cancer, HBOC, BRCA genes, Ashkenazi Jewish population
Date Deposited: 02 Jul 2012 14:11
Last Modified: 15 Nov 2016 13:57
URI: http://d-scholarship.pitt.edu/id/eprint/11890

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