Ethics in research can be broadly divided into two epistemic dimensions. One dimension focuses on bureaucratic procedures (i.e., procedural ethics), while the other focuses on contextually and culturally contested practice of ethics in research (i.e., ethics in practice). Researchers experience both dimensions distinctly in their qualitative research. The review of ethics in prospective research through bureaucratic procedures aims to measure compliance with documented requirements relating to research participants, data management, consent, and ensure researchers can demonstrate their ethical competence before they (...) commence their research. However, researchers often experience unanticipated ethical issues within the context of their research; sometimes ethics-related situations, including language sensitivity, cultural humility, and data processing experienced by researchers can be very different from what was included in bureaucratic procedures. In this study, phenomena related to research ethics in practice, as experienced by social scientists (n = 5) in their qualitative research, are hermeneutically explored and interpreted. The selected phenomena represent the researchers’ lived experiences regarding the practice of participant autonomy, specifically exploring participants’ right to withdraw from research. These phenomena are interpreted from the theoretical perspectives of situational relativism and self-determined autonomy. The interpreted phenomena reveal the current practices in ethical management of data collected from participants before their decision to withdraw from research (i.e., withdrawal data), are predominantly focused on tangible forms of data (i.e., the information that can easily be distinguished from other data), but ethical concerns associated with intangible forms of data are often neglected. The intangible forms of data are experiential knowing and understanding that include, feeling, emotion, courage, respect, celebration, anger, and the sense of being and belonging. The study recommends that researchers and research professionals should exercise ethical sensitivity and humility towards intangible forms of data collected during qualitative research when participants withdraw their consent. (shrink)

Recognising that offers of payment to research participants can serve various purposes—reimbursement, compensation and incentive—helps uncover differences between participants, which can justify differential payment of participants within the same study. Participants with different study-related expenses will need different amounts of reimbursement to be restored to their preparticipation financial baseline. Differential compensation can be acceptable when some research participants commit more time or assume greater burdens than others, or if inter-site differences affect the value of compensation. Finally, it may be permissible (...) to offer differential incentive payments if necessary to advance the goals of a study. We encourage investigators and Institutional Review Boards to think about whether to offer payment, in what amounts and for what purpose, and also to consider whether differential payment can help promote the scientific and ethical goals of clinical research. (shrink)

This article examines whether a crowdsourced research participant who quits a study before its completion should receive any monetary compensation. The study is focused on participants recruited from Amazon Mechanical Turk, the most widely used crowdsourcing platform, and examines the tensions between participants’ rights and research objectives when online labor markets are used to recruit research participants. The discussion is informed by the recent literature on online research with crowdsourced samples, evidence from human subjects’ practices at top US universities, and (...) an ethical analysis based on distributive justice and consequentialism. The results indicate that compensating crowdsourced research subjects who fail to complete their participation jeopardizes the benefits of many who dutifully participate and undermines the overall value of the research enterprise for advancing knowledge. By examining the issue of payment for crowdsourced participants who drop out, this article sheds light on modern ethical issues in online research and offers practical recommendations for researchers and ethics scholars. (shrink)

In “Assessing the Remedy: The Case for Contracts in Clinical Trials,” Sarah Edwards (2011) proposes that research participants acquire contractual obligations to investigators, thus opening the doo...

My paper on assent and reification in research involving adults with impairments of capacity and/or communication (AWIC)1 drew many thoughtful and insightful responses. I am grateful to all who submitted commentaries. Most agreed in principle that AWIC could be better represented in medical research. However, several commentators felt that further clarification was needed in terms of what assent is and how it should be obtained and operationalised.2 I fully agree that if increased representation of AWIC is to come about through (...) an assent-based approach, further clarificatory work is needed, and am glad to think my paper may function as a stimulus for this. Some commentators worry that an assent-based approach will impose heavy demands on researchers and entail higher costs.2 I acknowledge this, but would argue that if better inclusion of AWIC is a worthwhile goal, we should be willing to accept some costs. The move from an exclusionary to an inclusive approach will become less demanding once it is accepted as the default. And as I argue in my paper, we have resources on which to draw, including materials designed to facilitate comprehension and communication with AWIC that have been developed in other spheres,3 as well as existing protocols and structures that facilitate …. (shrink)

It is generally assumed in research ethics that research participants have an unconditional right to withdraw from research without any detriment or reprisal. This paper analyses this right in the context of biobank research and argues that the traditional shape of the right in clinical research can be modified in biobank research without incurring significant ethical cost. The paper falls in three parts. The first part is a brief explication of the philosophical justification of the right to withdraw. The second (...) part presents a number of extant criticisms of the right. And the third and final part argues that although a right to withdraw is crucial in relation to biobank research, such a right has to be specified in a different way to the similar right in relation to clinical research. (shrink)