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Attitudes Towards and Perceptions of Clinical Genetic Testing Among Pacific Islanders Living in the United States and US-Affiliated Pacific Islands(USAPI) Islanders Living in the United States and US-Affiliated Pacific Islands (USAPI)

Swann, Frank (2022) Attitudes Towards and Perceptions of Clinical Genetic Testing Among Pacific Islanders Living in the United States and US-Affiliated Pacific Islands(USAPI) Islanders Living in the United States and US-Affiliated Pacific Islands (USAPI). Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Background: A core value of the ethical, legal, and social implications (ELSI) of genetic research is the concept of public and provider education. Many studies to date have solicited attitudes of the general public in several parts of the world to assess baseline knowledge and attitudes, but there exist several gaps in the literature regarding attitudes towards genetic testing among Pacific Islanders. Methods: A survey was developed composed of questions from the literature and shared with Pacific Islander com-munities in the mainland United States and US-Affiliated Pacific Islands (USAPI). The survey asked participants to provide demographic information, answer true/false questions based on genetic concepts, and share their attitudes and perceptions toward genetic testing, medical family history, and preferences for return of results. Results: As a group, the average correct score on the genetic knowledge measure was 77.7%. Participants (N = 65) had limited experiences with genetics, including genetic testing (10.8%), genetic counseling (1.6%), and genetic research (1.5%). In the assessment of attitudes toward clinical testing, where, out of a possible 65 points, higher scores correlated with more favorable attitudes towards genetic testing, the average score was 50.38. A majority (84.6%) agreed either somewhat or strongly to the use of genetic testing for early detection of disease. Over 90% agreed, to some extent, that collecting family health history is important for understanding their own or their family’s disease risk. Of those sampled, 68.3% would want to receive any results if they participated in a health-related research study, including non-actionable results. Over three-quarters ex-pressed interest in receiving secondary results concerning personal health, regardless of whether it is for an illness that is treatable or untreatable. Conclusions: Participants in this study have demonstrated an interest in clinical genetic testing, recognize the value of medical family history for personal health, and endorsed openness to receiving genetic testing results and secondary results both actionable and non-actionable. However, there are still many barriers increasing access to genetic testing in Pacific Islander communities, including basic information such as prevalence of genetic disease among communities.

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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Swann, Frankfrs19@pitt.edufrs19
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairMinster, Ryanrminster@pitt.edurminster
Committee MemberHawley, Nicolanicola.hawley@yale.edu
Committee MemberDurst, Andreaadurst@pitt.eduadurst
Committee MemberElias, Thistleelias@pitt.eduelias
Committee MemberBacon, Vickievictoria.bacon@chp.edu
Date: 1 July 2022
Date Type: Publication
Defense Date: 21 June 2022
Approval Date: 1 July 2022
Submission Date: 24 June 2022
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 164
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Human Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: ELSI
Additional Information: Combined Master's Thesis and MPH Essay document
Date Deposited: 01 Jul 2022 19:05
Last Modified: 01 Jul 2022 19:05
URI: http://d-scholarship.pitt.edu/id/eprint/43227

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  • Attitudes Towards and Perceptions of Clinical Genetic Testing Among Pacific Islanders Living in the United States and US-Affiliated Pacific Islands(USAPI) Islanders Living in the United States and US-Affiliated Pacific Islands (USAPI). (deposited 01 Jul 2022 19:05) [Currently Displayed]

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