在按基因型回忆的研究方法中,如何与参与者沟通以及披露哪些信息:一项多步骤实证研究。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-09-26 DOI:10.1007/s12687-024-00733-8
Katharina Tschigg, Luca Consoli, Norbert Brüggemann, Andrew A Hicks, Ciara Staunton, Deborah Mascalzoni, Roberta Biasiotto
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引用次数: 0

摘要

逐基因型回顾(RbG)是一种自下而上的方法,利用现有基因数据设计后续分层研究。基因信息可能会在邀请时部分公开,从而引发伦理问题,这就要求在 RbG 方法中确定公开和交流的最佳实践。在南蒂罗尔合作健康研究(CHRIS)的 "ProtectMove "子项目中,我们调查了研究参与者对 RbG 沟通策略的看法(步骤 1 和步骤 4,分别对具有和不具有 RbG 经验的 CHRIS 参与者进行问卷调查)。此外,我们还探讨了研究人员和研究人员在 RbG 方面的经验(第 2 步和第 3 步,焦点小组讨论)。在步骤 1(N = 95)中,参与者普遍对研究过程表示满意。大多数人(71.6%)希望了解自己的承运人身份,以获得个人和集体利益。研究人员(第 2 步,N = 6)和研究人员(第 3 步,N = 7)都主张采取有针对性的披露策略以及透明、有效和深思熟虑的沟通方式。他们还提出了应对不确定性的挑战、RbG 邀请引起的担忧以及误解的可能性。在步骤 4(N = 369)中,参与者重视在首次邀请阶段被告知研究细节,并普遍对 RbG 研究邀请(58.5%)和研究后接收基因信息(58.5-81.6%)感到舒适。基因信息披露的舒适度和感知影响因可能披露的变异类型而异。本研究建议设计沟通策略,以清晰易懂的解释为基础,对参与者的期望和偏好保持敏感,并根据具体情况制定披露方案。
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How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.

Recall-by-genotype (RbG) is a bottom-up approach using existing genetic data to design follow-up stratified studies. Genetic information may be partially disclosed at invitation, thus raising ethical issues which call for defined best practices for disclosure and communication in RbG approaches. Within the context of the ProtectMove sub-project of the Cooperative Health Research in South Tyrol (CHRIS) study, we investigated research participant perspectives on RbG communication strategies (Step 1 and 4, questionnaire with a subsample of CHRIS participants with and without previous experience of RbG, respectively). Additionally, we explored researchers' and study personnel's experience with RbG (Step 2 and 3, focus group discussion). In step 1 (N = 95), participants were generally satisfied with the study process. Most (71.6%) wanted to know their carrier status for personal and collective benefit. Tailored disclosure strategies and transparent, effective, and well-thought-out communication approaches were advocated by study personnel (Step 2, N = 6) and researchers (Step 3, N = 7). Challenges in dealing with uncertainty, concerns caused by RbG invitations, and the possibility of misunderstanding were also raised. In step 4 (N = 369), participants valued being informed of study details at the first invitation stage, and generally felt comfortable towards RbG study invitations (58.5%) and to receiving genetic information after the study (58.5-81.6%). Comfort and perceived impact of disclosure of genetic information varied according to the type of variant being potentially disclosed. This study suggested designing communication strategies, based on clear and understandable explanations, sensitive to participant expectations and preferences, developing case-by-case solutions for disclosure.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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