التفاصيل البيبلوغرافية
العنوان:
Understanding the Patient Experience of Receiving Clinically Actionable Genetic Results from the MyCode Community Health Initiative, a Population-Based Genomic Screening Initiative
المؤلفون:
Anna Baker , Kasia Tolwinski , Jamie Atondo , F. Daniel Davis , Jessica Goehringer , Laney K. Jones , Cassandra J. Pisieczko , Amy C. Sturm , Janet L. Williams , Marc S. Williams , Alanna Kulchak Rahm , Adam H. Buchanan
المصدر:
Journal of Personalized Medicine, Vol 12, Iss 9, p 1511 (2022)
بيانات النشر:
MDPI AG, 2022.
سنة النشر:
2022
المجموعة:
LCC:Medicine
مصطلحات موضوعية:
genomic screening , biobank , genetic testing , psychological outcomes , patient experience , Medicine
الوصف:
Understanding unselected individuals’ experiences receiving genetic results through population genomic screening is critical to advancing clinical utility and improving population health. We conducted qualitative interviews with individuals who received clinically actionable genetic results via the MyCode© Genomic Screening and Counseling program. We purposively sampled cohorts to seek diversity in result-related disease risk (e.g., cancer or cardiovascular) and in personal or family history of related diseases. Transcripts were analyzed using a two-step inductive coding process of broad thematic analysis followed by in-depth coding of each theme. Four thematic domains identified across all cohorts were examined: process assessment, psychosocial response, behavioral change due to the genetic result, and family communication. Coding of 63 interviews among 60 participants revealed that participants were satisfied with the results disclosure process, initially experienced a range of positive, neutral, and negative psychological reactions to results, adjusted positively to results over time, undertook clinically indicated actions in response to results, and communicated results with relatives to whom they felt emotionally close. Our findings of generally favorable responses to receiving clinically actionable genetic results via a genomic screening program may assuage fear of patient distress in such programs and guide additional biobanks, genomic screening programs, and research studies.
نوع الوثيقة:
article
وصف الملف:
electronic resource
اللغة:
English
تدمد:
2075-4426
العلاقة:
https://www.mdpi.com/2075-4426/12/9/1511Test ; https://doaj.org/toc/2075-4426Test
DOI:
10.3390/jpm12091511
الوصول الحر:
https://doaj.org/article/bf78f1c6b3ad41a98079a2ab2d24a01dTest
رقم الانضمام:
edsdoj.bf78f1c6b3ad41a98079a2ab2d24a01d
قاعدة البيانات:
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