Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons
We identify concerns pertinent to establishing trust necessary to support adoptees’ confidence in and uptake of genetic testing that might allow them to benefit from early screening and medical intervention. Using principles of community-based participatory research, our study sought to build a foun...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
The University of Alabama
2022-07-01
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| Series: | Journal of Community Engagement and Scholarship |
| Online Access: | https://account.jces.ua.edu/index.php/s-j-jces/article/view/206 |
| _version_ | 1797733255735148544 |
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| author | Kaija L. Zusevics Kimberly Strong Michael McCauley Alison La Pean Kirschner Jessica Jeruzal Samantha Wilson Carmen Knight Thomas May |
| author_facet | Kaija L. Zusevics Kimberly Strong Michael McCauley Alison La Pean Kirschner Jessica Jeruzal Samantha Wilson Carmen Knight Thomas May |
| author_sort | Kaija L. Zusevics |
| collection | DOAJ |
| description | We identify concerns pertinent to establishing trust necessary to support adoptees’ confidence in and uptake of genetic testing that might allow them to benefit from early screening and medical intervention. Using principles of community-based participatory research, our study sought to build a foundation of trust to document such perspectives. Three focus groups were held with 12 adult adoptees. Transcripts were analyzed using thematic content analysis. Comments highlighted aspects related to genomics and health history in the context of adoption, specifically: (1) trust in the intention of the research study; (2) trust that the adoption community will benefit from the results of research; and (3) trust in the protection from misuse and abuse of genomic data. Results reinforce the call for proper security of data and oversight of the ways it is used and point to the value of including researchers who are a part of the community under study. |
| first_indexed | 2024-03-12T12:26:33Z |
| format | Article |
| id | doaj.art-39d1480819e24e4f9da53997ce7afee4 |
| institution | Directory Open Access Journal |
| issn | 1944-1207 2837-8075 |
| language | English |
| last_indexed | 2024-03-12T12:26:33Z |
| publishDate | 2022-07-01 |
| publisher | The University of Alabama |
| record_format | Article |
| series | Journal of Community Engagement and Scholarship |
| spelling | doaj.art-39d1480819e24e4f9da53997ce7afee42023-08-29T21:04:41ZengThe University of AlabamaJournal of Community Engagement and Scholarship1944-12072837-80752022-07-0110210.54656/MPYE6575Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted PersonsKaija L. Zusevics0Kimberly Strong1Michael McCauley2Alison La Pean Kirschner3Jessica Jeruzal4Samantha Wilson5Carmen Knight6Thomas May7Center for Urban Population HealthHudsonAlpha Institute for BiotechnologyMedical College of WisconsinMedical College of WisconsinAllina HealthMedical College of WisconsinThe CradleHudsonAlpha BiotechnologyWe identify concerns pertinent to establishing trust necessary to support adoptees’ confidence in and uptake of genetic testing that might allow them to benefit from early screening and medical intervention. Using principles of community-based participatory research, our study sought to build a foundation of trust to document such perspectives. Three focus groups were held with 12 adult adoptees. Transcripts were analyzed using thematic content analysis. Comments highlighted aspects related to genomics and health history in the context of adoption, specifically: (1) trust in the intention of the research study; (2) trust that the adoption community will benefit from the results of research; and (3) trust in the protection from misuse and abuse of genomic data. Results reinforce the call for proper security of data and oversight of the ways it is used and point to the value of including researchers who are a part of the community under study.https://account.jces.ua.edu/index.php/s-j-jces/article/view/206 |
| spellingShingle | Kaija L. Zusevics Kimberly Strong Michael McCauley Alison La Pean Kirschner Jessica Jeruzal Samantha Wilson Carmen Knight Thomas May Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons Journal of Community Engagement and Scholarship |
| title | Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons |
| title_full | Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons |
| title_fullStr | Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons |
| title_full_unstemmed | Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons |
| title_short | Community Engagement, Trust, and Genetic Testing for Inherited Diseases Among Adopted Persons |
| title_sort | community engagement trust and genetic testing for inherited diseases among adopted persons |
| url | https://account.jces.ua.edu/index.php/s-j-jces/article/view/206 |
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