Carey Meghan E, McLean Kiley J, Chvasta Kyle, de Marchena Ashley, Roux Anne M
Drexel University, USA.
University of Pennsylvania, USA.
Autism. 2025 Apr;29(4):859-867. doi: 10.1177/13623613241298037. Epub 2024 Nov 24.
Alongside the rise in online qualitative research, fraudulent representation of research participants is increasing, and current strategies to address this issue within studies of non-neurodiverse samples may exclude autistic voices. Seeking to reduce fraudulent or "scammer" participation in our focus group study, and increase data validity and expenditure efficiency, we implemented strategies suggested in the literature and tested additional strategies. This research adds to the growing conversation around best practices for reducing scammers in autism research using online methods by (1) providing data evaluating the utility of existing strategies; (2) testing emerging strategies; and (3) discussing ethical dilemmas involved in addressing scammers in studies. We received over 200 expressions of interest and the established strategies suggested in the literature plus emerging strategies proved critical for mitigating the enrollment of scammers in focus groups. Protecting the integrity of data about human subjects from fraud is essential for rigorous autism research; trustworthy conclusions cannot be otherwise drawn from analysis. However, the strategies inherently require subjective decision-making that could systematically exclude participants with more limited or atypical communication and result in unfair subject selection. Procedures we recommend incur resources and are time consuming but are beneficial to ensure data integrity and inclusivity.Lay abstractOver the last decade, especially since the pandemic, more research has been happening online. Conducting research online can create opportunities to include autistic people across the world and make our studies more diverse. However, conducting research online had led to scammers, or people pretending to be autistic, participating in autism research studies. Strategies to stop scammers may accidentally leave out autistic people who have difficulty with processing time and open-ended questions. We tried out documented strategies to stop scammers from participating in autism research. We also tested new strategies to understand how helpful they are. Using these strategies, we suspected over 100 people who wanted to participate were scammers and did not invite them to participate. As researchers, we must ensure we stop scammers from participating in our studies. It's important to highlight autistic voices and guarantee we get accurate results. However, the strategies to identify scammers may also leave out autistic people who have communication differences. This is unfair and could also make our results less reliable. The existing and new strategies to stop scammers take a lot of time and resources but they're worth it to make sure our data are reliable, and include only autistic voices.
随着在线定性研究的兴起,研究参与者的欺诈性表现日益增加,而目前在非神经差异样本研究中解决这一问题的策略可能会将自闭症患者的声音排除在外。为了减少欺诈性或“诈骗者”参与我们的焦点小组研究,并提高数据有效性和支出效率,我们实施了文献中建议的策略,并测试了其他策略。本研究通过以下方式,为围绕使用在线方法减少自闭症研究中诈骗者的最佳实践展开的日益增多的讨论做出了贡献:(1)提供评估现有策略效用的数据;(2)测试新兴策略;(3)讨论研究中应对诈骗者所涉及的伦理困境。我们收到了200多份感兴趣的表达,文献中建议的既定策略以及新兴策略对于减轻诈骗者参与焦点小组的情况至关重要。保护关于人类受试者的数据完整性免受欺诈对于严谨的自闭症研究至关重要;否则无法从分析中得出可靠的结论。然而,这些策略本质上需要主观决策,这可能会系统性地排除沟通能力更有限或更不典型的参与者,并导致不公平的受试者选择。我们推荐的程序需要资源且耗时,但有利于确保数据完整性和包容性。
摘要
在过去十年中,尤其是自疫情以来,越来越多的研究在网上进行。在线开展研究可以创造机会纳入世界各地的自闭症患者,使我们的研究更加多样化。然而,在线开展研究导致了诈骗者,即假装成自闭症患者的人,参与自闭症研究。阻止诈骗者的策略可能会意外地遗漏那些在处理时间和开放性问题方面有困难的自闭症患者。我们尝试了已记录的策略来阻止诈骗者参与自闭症研究。我们还测试了新策略,以了解它们的帮助程度。使用这些策略,我们怀疑超过100名想要参与的人是诈骗者,因此没有邀请他们参与。作为研究人员,我们必须确保阻止诈骗者参与我们的研究。突出自闭症患者的声音并保证我们得到准确的结果很重要。然而,识别诈骗者的策略也可能会遗漏那些有沟通差异的自闭症患者。这是不公平的,也可能使我们的结果不那么可靠。现有的和新的阻止诈骗者的策略需要大量时间和资源,但为了确保我们的数据可靠且只包含自闭症患者的声音,它们是值得的。