Artificial placentas (APs) are technologies that mimic the human placenta to treat extremely preterm infants. Being an invasive and risky technology, it will raise important ethical questions for human trials. Hence, in this Topic Piece we provide a blueprint of further issues to investigate. First, counselling will have the double role of…

Research consent processes must provide potential participants with the necessary information to help them decide if they wish to join a study. On the Oxford 'A' Research Ethics Committee we've found that current research proposals mostly provide adequate detail (even if not in an easily comprehensible format), but often fail to support decision…

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,…

Participatory, rights-based methodologies in childhood studies have explored conditions that realise children's rights to participation. One avenue of investigation has been to explore assent procedures that respect children's rights to make informed decisions about participation. Less attention has been directed towards the ways in which children…

Inner speaking, the production, and experience of verbal language without any audible vocalization is a critical component of inner experience and imagination. The role that (un)certainty plays in idea generation might explain the unique ways in which idea generation is characterized and affected by different types of inner speech. To explore this…

This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients' attitudes towards participating in a…

Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants…

Formal consent for children's research participation legally resides with adults, and guidelines typically recommend consulting children about their participation only from 7 years of age. How can researchers support younger children's informed decision-making about their research participation, particularly in larger-scale studies without…

Due to limited knowledge and exposure to sexual health information, refugee adolescent girls need health education programming and research studies that oftentimes require parental consent. We sought to understand the parental consent decision-making process of thirteen refugee parents from eight different countries who consented for their…

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'…

This qualitative grounded theory study is the first of its kind aimed at understanding the decision-making process of parents and guardians of transgender and gender-diverse (TGD) youth providing informed consent for their children to undergo gender-confirming endocrinological interventions (GCEI), such as hormone replacement therapy and puberty…

Advances in the field of multimodal learning analytics (MMLA) research is often accomplished by actively exploring new technologies and techniques related to the collection and analysis of data. Exploration of ethical principles and procedures for governing the use of new technologies and techniques, however, is not as readily pursued. As…

This article presents the findings of a systematic qualitative analysis of research in the ethics of digital trace data use in learning and education. From the resulting analysis of 77 peer-reviewed studies, we (1) map the characteristics of research by study type, academic community, institutional setting, and national context; (2) identify the…

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…

Background: Medical research on children has increased in the last 20 years. International ethical regulations for conducting clinical research on children may not pertain to Muslim communities where religious beliefs play a big role in decision-making process. Methods: The aim of this paper was to illustrate the origins of bioethics principles in…