Cassie Mayer, Rebecca Tryon, Sarah Ricks, Kara Lane, Emma Van Hook, Kimberly Zayhowski
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Preventing fraudulent research participation: Methodological strategies and ethical impacts
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.
期刊介绍:
The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.