To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions,…

Internet users' comments in online spaces have attracted researchers' attention in recent years. Although this data is typically publicly available, its use requires careful consideration so as to not cause harm to the users, while complying with the terms and conditions (Ts & Cs) of the online spaces. However, the Ts & Cs and researchers'…

In this paper, I discuss methodological and ethical issues that arose in the process of documenting lexical variation in Yucatec Maya Sign Languages (YMSLs). YMSLs are indigenous sign languages used by deaf and hearing people in Yucatec Maya villages with a high incidence of deafness in the peninsula of Yucatán, Mexico. The documentation of rural…

Although ethical guidelines for doing Internet research are available, most prominently those of the Association of Internet Researchers (www.aoir.org), ethical decision-making for research on publicly available, naturally-occurring data remains a major challenge. As researchers might also turn to others to inform their decisions, this article…

We systematically reviewed contemporary literature to create an evidence-informed framework for research studies involving children and adolescents who can assent to participate. We searched seven citation indices to locate peer-reviewed research published in English language journals between 2000 and 2012. After screening 1,231 titles and…

This study describes the experiences of a researcher negotiating consent with people with learning disabilities to become participants in a research study. The study was about how the Mental Capacity Act (MCA) was applied to everyday decision-making in social care settings. However, before data collection could begin, the researcher had to follow…