Deception in research through partial disclosure: Exploring the Ethics Committee dilemma
Description
The qualitative dataset titled "Deception in research through partial disclosure: Exploring the Ethics Committee dilemma" explores the ethical complexities surrounding the use of partial disclosure in human subjects research. Based on detailed interviews and thematic coding of responses from Ethics Committee (EC) members and stakeholders, the dataset captures diverse perspectives on when, why, and how partial disclosure is used, and the extent to which it is ethically permissible. Participants reflect on their awareness (or lack thereof) of the concepts of deception and partial disclosure, often conflating the two, and express uncertainty about their justifications and boundaries. The dataset reveals critical issues in informed consent processes, including miscommunication, incomplete disclosure, and the challenges of ensuring participant autonomy, particularly when vulnerable populations are involved. It also highlights institutional and operational challenges faced by ECs, such as time constraints, limited subject expertise, poor translation practices, and the difficulty of identifying unethical practices during protocol review. Additionally, it documents researchers' tendencies to prioritize scientific goals over participant welfare, sometimes engaging in misleading practices or failing to report adverse events or sample reuse. The data highlights the need for clearer guidelines, standard operating procedures (SOPs), and continuous ethical training for both researchers and EC members. Through rich verbatim quotes and layered coding, the dataset provides a nuanced understanding of how ethical dilemmas related to deception and partial disclosure unfold in real-world research oversight settings.
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Steps to reproduce
Our starting hypothesis was that Ethics Committee (EC) members hold diverse, sometimes conflicting, conceptions of “partial disclosure” versus “deception,” and that these conceptual differences; together with heavy workloads and limited procedural guidance; produce inconsistent reviews of protocols that use incomplete disclosure. We further posited that partial disclosure is judged acceptable only under narrowly defined, risk mitigated circumstances, creating a policy gap that could be closed by clearer standard operating procedures (SOPs) and researcher training. To test this, we generated a qualitative dataset drawn from eight semi structured, audio recorded interviews (“Transcript001–Transcript008”) with EC members from tertiary hospitals and research institutes. Interviews followed an open ended guide that probed experience with deception studies, informed consent review, risk assessment, and oversight challenges. Recordings were transcribed verbatim, anonymised, and imported into NVivo 14 for analysis. Using an inductive thematic content approach (Braun & Clarke, 2006), two analysts separately open coded each transcript, met to reconcile codebooks, and then produced axial categories such as “Informed‐consent issues,” “EC related challenges,” “Protocol factors,” “Researcher behaviour,” “Motivations,” and “Deception specific risks.” We kept an audit trail of memos, revision logs, and code definitions to ensure dependability and transferability. The data confirm the hypothesis in several ways; conceptual ambiguity, conditional acceptability, operational barriers, translation mismatches between English and local language consent forms further hampered oversight. Researcher‐driven deception: Examples ranged from re using archived biospecimens without re consent to disguising product trade names to avoid scrutiny. Need for SOPs: Respondents repeatedly called for explicit SOPs on detecting and managing deception, including routine video recording of consent and post approval monitoring. Taken together, the findings indicate a systemic tension: EC members wish to protect participants through full transparency, yet real world constraints and nuanced scientific designs sometimes necessitate partial disclosure. Without harmonised guidance, judgements default to individual intuition, risking both over restriction of valuable studies and under protection of participants. Researchers or educators can reuse this dataset by following the documented workflow: replicate the interview guide; recruit EC members with varied tenure and disciplinary backgrounds; audio record, verbatim transcribe, and double code transcripts in NVivo (or open source equivalents such as Taguette); and apply an audit trailed thematic analysis.
Institutions
- Yenepoya University Yenepoya Medical College