Mayer Cassie, Tryon Rebecca, Ricks Sarah, Lane Kara, Van Hook Emma, Zayhowski Kimberly
Master's Program in Genetic Counseling, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts, USA.
Division of Pediatric Blood and Marrow Transplant, M Health Fairview, Minneapolis, Minnesota, USA.
J Genet Couns. 2025 Jun;34(3):e70048. doi: 10.1002/jgc4.70048.
This article addresses a growing issue in genetic counseling research: the participation of individuals who falsify demographic information or experiences to qualify for studies, often motivated by remuneration. This issue is particularly pressing in studies using social media recruitment, where detecting fraudulent participants has become increasingly difficult. The prevalence of inaccurate data raises serious questions about the integrity, reliability, and validity of research findings. We explore potential sources of participant fraud and inconsistency informed by prior, direct experience with fraudulent participants, discussing various strategies to strengthen participant screening, data validation, and interview protocols. We also examine the challenges screening methods pose for marginalized communities, who may already harbor distrust in research or face privacy concerns. We emphasize the need for transparent, responsible approaches to participant verification and advocate for developing standardized guidelines to protect both research quality and participant rights. By promoting trust, inclusivity, and fairness in research practices, we aim to preserve the dignity of participants and ensure that genetic counseling research remains rigorous. Ultimately, we call for collective action to reinforce the integrity of research and enhance its impact on clinical practice, ensuring that evidence-based insights guide patient-centered care.
一些人出于报酬动机,伪造人口统计学信息或经历以符合研究资格。在使用社交媒体招募的研究中,这个问题尤为紧迫,因为检测欺诈性参与者变得越来越困难。不准确数据的普遍存在对研究结果的完整性、可靠性和有效性提出了严重质疑。我们根据之前与欺诈性参与者的直接经验,探讨了参与者欺诈和数据不一致的潜在来源,讨论了加强参与者筛选、数据验证和访谈协议的各种策略。我们还研究了筛选方法给边缘化社区带来的挑战,这些社区可能已经对研究怀有不信任或面临隐私问题。我们强调需要采取透明、负责的方法进行参与者核实,并倡导制定标准化指南,以保护研究质量和参与者权利。通过在研究实践中促进信任、包容性和公平性,我们旨在维护参与者的尊严,并确保遗传咨询研究保持严谨性。最终,我们呼吁采取集体行动,加强研究的诚信性,并增强其对临床实践的影响,确保基于证据的见解指导以患者为中心的护理。