رسالة جامعية
Race, Ethnicity, and Ancestry Data in Clinical Genomics Laboratories: Collection, Use, and Storage
| العنوان: | Race, Ethnicity, and Ancestry Data in Clinical Genomics Laboratories: Collection, Use, and Storage |
|---|---|
| المؤلفون: | Hausfeld, Charles David |
| بيانات النشر: | The Ohio State University / OhioLINK, 2022. |
| سنة النشر: | 2022 |
| المجموعة: | Ohiolink ETDs |
| Original Material: | http://rave.ohiolink.edu/etdc/view?acc_num=osu1650224507218505Test |
| مصطلحات موضوعية: | Genetics, Health Care, Health Sciences, Medical Ethics, Medicine, Molecular Biology, Biology, Biomedical Research, Demographics, Health, Health Care Management, Race, Ethnicity, Ancestry, Genetic, Genomic, Genetic testing, Laboratories, Laboratory, Clinical, CLIA, Race, Ethnicity, and Ancestry Data, Race, Ethnicity, and Ancestry, REA, REA data, Genetic testing laboratories, Clinical genetic testing laboratories, Variant interpretation, Variant reinterpretation, Genetic counseling |
| الوصف: | Although many clinical genetic testing laboratories collect race, ethnicity, and ancestry (REA) information, there are documented issues inherent to the process. Obtaining a better understanding of clinical genetic testing laboratory practices surrounding REA data provides an opportunity to better understand how they contribute to and mitigate social inequities in genetic medicine. To investigate current REA data practices, this study aimed to characterize clinical genetic testing laboratory REA data collection, use, and storage practices as reported by laboratory employees. Participants (n=57) completed a survey addressing current collection, use, and storage practices, as well as opinions regarding REA data. Most laboratories reportedly collect (95%, n=41), use (82%, n=33), and store (71%, n=34) REA data. REA data collection and use varies in relation to test type, clinical specialty, admixed ancestry, and collection source. All (100%, 10/10) employees who perform variant interpretation (VI) report inclusion of population-based criteria in their VI protocol, but only half use REA data in VI very frequently (50%, 4/8), while half use it very infrequently (50%, 4/8). Participants had a greater endorsing than refuting opinion about the need for improved REA data practices (67%, 24/36) and transparency (38%, 13/34). Nearly half of participants reported REA data practices contribute to systemic racism (41%, 13/42) and healthcare inequities (47%, 14/30). Most participants reported it is the responsibility of laboratories to assess their REA data practices (70%, 21/30) and expressed at least some willingness to contribute to developing REA data practice guidelines (45%, 13/29). Quantifiably characterizing laboratory practices via employee reports builds opportunities for research further identifying factors exacerbating and mitigating any contributions REA data practices make to systemic issues, and may aid in the development of REA data practice guidelines. |
| Original Identifier: | oai:etd.ohiolink.edu:osu1650224507218505 |
| نوع الوثيقة: | text |
| اللغة: | English |
| الإتاحة: | http://rave.ohiolink.edu/etdc/view?acc_num=osu1650224507218505Test |
| حقوق: | unrestricted This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws. |
| رقم الانضمام: | edsndl.OhioLink.oai.etd.ohiolink.edu.osu1650224507218505 |
| قاعدة البيانات: | Networked Digital Library of Theses & Dissertations |
| الوصف غير متاح. |