دورية أكاديمية
Defining critical educational components of informed consent for genetic testing: views of US-based genetic counselors and medical geneticists.
| العنوان: | Defining critical educational components of informed consent for genetic testing: views of US-based genetic counselors and medical geneticists. |
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| المؤلفون: | Hallquist MLG; Geisinger, Danville, PA, USA. mhallquist@geisinger.edu., Borensztein MJ; Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA., Coughlin CR 2nd; Department of Pediatrics and Center for Bioethics and Humanities, University of Colorado Anschutz Medical Campus, Aurora, CO, USA., Buchanan AH; Geisinger, Danville, PA, USA., Andrew Faucett W; Geisinger, Danville, PA, USA., Peay HL; RTI International, Genomics, Bioinformatics, and Translational Research Center, Raleigh, NC, USA., Smith ME; Department of Medicine, Feinberg School of Medicine, Northwestern University, Evanston, IL, USA., Tricou EP; Geisinger, Danville, PA, USA.; Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA., Uhlmann WR; Division of Genetic Medicine, Department of Internal Medicine; Department of Human Genetics; Center for Bioethics & Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, USA., Wain KE; Geisinger, Danville, PA, USA., Ormond KE; Department of Genetics, Stanford University School of Medicine, Stanford, CA, USA.; Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA.; Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, Zurich, Switzerland. |
| المصدر: | European journal of human genetics : EJHG [Eur J Hum Genet] 2023 Oct; Vol. 31 (10), pp. 1165-1174. Date of Electronic Publication: 2023 Jun 12. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Extramural |
| اللغة: | English |
| بيانات الدورية: | Publisher: Nature Publishing Group Country of Publication: England NLM ID: 9302235 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1476-5438 (Electronic) Linking ISSN: 10184813 NLM ISO Abbreviation: Eur J Hum Genet Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: <2003->: London : Nature Publishing Group Original Publication: Basel ; New York : Karger, [1992- |
| مواضيع طبية MeSH: | Counselors*, Humans ; Informed Consent/psychology ; Disclosure ; Genetic Testing ; Educational Status ; Genetic Counseling/psychology |
| مستخلص: | The Clinical Genome Resource (ClinGen) Consent and Disclosure Recommendation (CADRe) framework proposes that key components of informed consent for genetic testing can be covered with a targeted discussion for many conditions rather than a time-intensive traditional genetic counseling approach. We surveyed US genetics professionals (medical geneticists and genetic counselors) on their response to scenarios that proposed core informed consent concepts for clinical genetic testing developed in a prior expert consensus process. The anonymous online survey included responses to 3 (of 6 possible) different clinical scenarios that summarized the application of the core concepts. There was a binary (yes/no) question asking respondents whether they agreed the scenarios included the minimum necessary and critical educational concepts to allow an informed decision. Respondents then provided open-ended feedback on what concepts were missing or could be removed. At least one scenario was completed by 238 respondents. For all but one scenario, over 65% of respondents agreed that the identified concepts portrayed were sufficient for an informed decision; the exome scenario had the lowest agreement (58%). Qualitative analysis of the open-ended comments showed no consistently mentioned concepts to add or remove. The level of agreement with the example scenarios suggests that the minimum critical educational components for pre-test informed consent proposed in our prior work is a reasonable starting place for targeted pre-test discussions. This may be helpful in providing consistency to the clinical practice of both genetics and non-genetics providers, meeting patients' informational needs, tailoring consent for psychosocial support, and in future guideline development. (© 2023. The Author(s), under exclusive licence to European Society of Human Genetics.) |
| التعليقات: | Comment in: Eur J Hum Genet. 2023 Jul 13;:. (PMID: 37438414) |
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| معلومات مُعتمدة: | U41 HG009649 United States HG NHGRI NIH HHS; U41 HG009650 United States HG NHGRI NIH HHS; U41HG009649 United States HG NHGRI NIH HHS; U41HG009650 United States HG NHGRI NIH HHS |
| تواريخ الأحداث: | Date Created: 20230612 Date Completed: 20231004 Latest Revision: 20240210 |
| رمز التحديث: | 20240210 |
| مُعرف محوري في PubMed: | PMC10545703 |
| DOI: | 10.1038/s41431-023-01401-0 |
| PMID: | 37308598 |
| قاعدة البيانات: | MEDLINE |
Find this article in full text from Springer Verlag. 
Full Text Finder | تدمد: | 1476-5438 |
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| DOI: | 10.1038/s41431-023-01401-0 |