“Why didn’t we do it”? Reproductive loss and the problem of post-mortem consent
Kate Reed, Maria Teresa Ferazzoli, Elspeth Whitby
Social Science & Medicine, 12 March 2021
Abstract
Informed consent has been a much debated topic within the social sciences. It often forms a central feature of discussions on research in medical settings and in social research methods more broadly. While sympathetic to its’ underlying principles of autonomy and choice, social scientists have tended to argue that these are seldom enacted in research or clinical practice. Rather, such principles are often circumscribed by wider social structures and by a culture of medical dominance. Drawing on data from a qualitative study on perinatal post-mortem, this paper explores informed consent in the emotionally charged clinical arena of perinatal pathology. Our in-depth analysis will provide fresh insight into post-mortem decision-making in the sensitive arena of baby loss. Our findings show how parents often found it difficult to give consent for post-mortem, and also for professionals to take consent from parents. It was also not uncommon for parents to experience regret over non-consent later on. One of our key findings, however, related to the sense of emotional and diagnostic closure often afforded by post-mortem when consent had been given. We conclude by arguing that, although we cannot resolve the tension between the principles of consent and their enactment in practice, we can develop a reflexive approach with which to navigate the process. In doing so, the paper contributes to wider sociological discussions on the meaning and use of informed consent in various settings beyond medical contexts.

A Qualitative Analysis of Ethical Perspectives on Recruitment and Consent for Human Intracranial Electrophysiology Studies
Joncarmen V. Mergenthaler, Winston Chiong, Daniel Dohan, Josh Feler, Cailin R. Lechner, Philip A. Starr, Jalayne J. Arias
AJOB Neuroscience, 2 February 2021; pp 57-67
Abstract
Intracranial electrophysiological research methods, including those applying electrodes on the cortical surface or in deep structures, have become increasingly important in human neuroscience. They also pose novel ethical concerns, as human studies require the participation of neurological patients undergoing surgery for conditions such as epilepsy and Parkinson’s disease. Research participants in this setting may be vulnerable to conflicts of interest, therapeutic misconception, and other threats to valid recruitment and consent. We conducted semi-structured interviews with investigators from NIH-funded studies involving recording or stimulation inside the human skull. We elicited perspectives on study recruitment and consent procedures, and analyzed transcripts using a modified grounded theory approach. We interviewed 26 investigators from 19 separate intracranial electrophysiology studies, who described two study types: opportunity studies (n = 15) and experimental trials (n = 4). Respondents described significant heterogeneity in recruitment and consent procedures, even among studies employing similar techniques. In some studies, clinician-investigators were specifically barred from obtaining consent, while in other studies clinician-investigators were specifically required to obtain consent; regulatory guidance was inconsistent. Respondents also described various models for subject selection, the timing of consent, and continuing consent for temporally extended studies. Respondents expressed ethical concerns about participants’ vulnerability and the communication of research-related risks. We found a lack of consensus among investigators regarding recruitment and consent methods in human intracranial electrophysiology. This likely reflects the novelty and complexity of such studies and indicates a need for further discussion and development of best practices in this research domain.

Ethical review and informed consent guidelines of high impact anthropology, business, and education research journals
Original Article
Antti Mikael Rousi
Learned Publishing, 11 January 2021
Abstract
Whereas participant protection protocols are norms in medical research, they are only recently being adopted in social and behavioural sciences. This study examined human subject guidelines in the top 40 high‐impact anthropology, business, and education research journals according to their impact factor as released in 2019. For these 120 journals, a unified classification framework was developed to capture the central elements of their ethical review and informed consent requirements. The findings suggest that the investigated journals do not view ethical review as an established norm for interview and survey studies. Only 10 (8%) journals required ethical review from all studies involving human participants. Informed consent was more frequently addressed, but none of the fields exhibited widely established guidelines similar to medical research journals. A total of 31 (26%) journals required informed consent from all studies involving human participants. There was little difference between the three disciplines investigated. Although the investigated journals represented social and behavioural sciences, their guidelines often concerned medical or intervention research with few requirements for interaction (e.g. survey) research. There is an opportunity for high‐impact journals to establish norms for adoption by researchers and other journals.

Evaluating survey consent to social media linkage in three international health surveys
Zeina N. Mneimneh, Ronny Bruffarets, Yasmin A. Altwaijri, Colleen McClain
Research in Social and Administrative Pharmacy, 10 August 2020
Abstract
Background
The use of Twitter data for health-related research has been increasing over time. While the organic nature of the data offer new opportunities, the limited understanding of how and by whom the data are generated poses a challenge for advancing health-related research. Individual-level data linkage could shed light into the data generation mechanism.
Objectives
This paper investigates whether consent to link survey data with Twitter public data is associated with socio-demographic and Twitter use pattern factors and whether consenters and non-consenters differ on health-related outcomes.
Methods
Data from three health related surveys that use probability samples of the target population were used: 1) A college population web survey in KU Leuven University, 2) An adult population web survey of the US population, and 3) A population face-to-face survey in the Kingdom of Saudi Arabia (KSA). In all surveys, respondents reported whether they have a Twitter account, and Twitter users were asked to provide consent for linking their survey responses to their public Twitter data.
Results
Consent rate estimates from the two web surveys in Belgium and the US were 24% and 27% respectively. The face-to-face survey in KSA yielded a higher consent rate of 45%. In general, respondent’s sociodemographic characteristics were not significantly associated with consent to link. However, more use of social media and reporting sensitive information in the survey were found to be significantly correlated with higher consent. Consenters and non-consenter were not found to be statistically different on any of the health related measures.
Conclusions
Very few differences were found between those who consented to link their survey data with their Twitter public data and those who did not. Modifiable design variables need to be investigated to maximize consent while maintaining balance between consenters and non-consenters.

Ethics and access when consent must come first [BOOK CHAPTER]
Hugh Busher, Alison Fox
Implementing Ethics in Educational Ethnography
Taylor & Francis, 2019; Chapter 4
Open Access
Abstract
Formalised procedures to obtain and document informed consent from research participants are at the heart of the shift from informal to formalised research ethics. Critiques claim that the requirements to obtain consent from all potential participants before the onset of a study will make it impossible to do ethnographic research and participant observation in institutional settings such as schools. Drawing on experiences from an ethnographic research project in secondary schools in Norway, the aim of this chapter is to discuss the ethical considerations and, embedded in these, the methodological and analytical challenges involved in doing participant observation in schools where not all pupils and parents have consented to participation in the research. The chapter suggests possible ways forward for tackling these challenges for ethnographic researchers working in schools.

Automating dynamic consent decisions for the processing of social media data in health research
Chris Norval, Tristan Henderson
Journal of Empirical Research on Human Research Ethics, September 2019
Open Access
Abstract
Social media have become a rich source of data, particularly in health research. Yet, the use of such data raises significant ethical questions about the need for the informed consent of those being studied. Consent mechanisms, if even obtained, are typically broad and inflexible, or place a significant burden on the participant. Machine learning algorithms show much promise for facilitating a ‘middle ground approach: using trained models to predict and automate granular consent decisions. Such techniques, however, raise a myriad of follow-on ethical and technical considerations. In this paper, we present an exploratory user study (n = 67) in which we find that we can predict the appropriate flow of health-related social media data with reasonable accuracy, while minimising undesired data leaks. We then attempt to deconstruct the findings of this study, identifying and discussing a number of real-world implications if such a technique were put into practice.

What Qualitative Researchers Must Do When Ethical Assurances Disintegrate? Recognise Internal Confidentiality, Establish Process Consent, Reference Groups, Referrals for Participants and a Safety Plan [Conference Paper]
Martin Tolich
World Conference on Qualitative Research, 17 September 2019
Abstract
Informed consent and confidentiality are the two mainstays of qualitative research ethics, yet they have a propensity to disintegrate in an emergent, iterative research design. This chapter examines how to approach this uncharted territory by having researchers take full responsibility for ethical considerations by using more robust forms of consent like process consent; recognising the dual faces of confidentiality, distinguishing external confidentiality from internal confidentiality. Other responsibilities in post ethics review environment include recognising and addressing big ethical moments. At times, participants and researchers ethical protections disintegrate too. When participants are at risk, furnish referrals (i.e. suicide watch phone numbers). When researchers are at risk work off a safety plan. Additionally, given this unpredictability, researchers should create a standing reference group to assist answering the fourth question above: what to do when the project raises ethical questions not foreseen in formal ethics review or by the researcher.

Informed consent at stake? Language barriers in medical interactions with immigrant anaesthetists: a conversation analytical study
Damaris Borowski, Uwe Koreik, Udo Ohm, Claudia Riemer, Niels Rahe-Meyer
BMC Health Services Research, 23 August 2019; 19(597)
Open Access
Abstract
Background
Language barriers in doctor-patient interactions are still an understudied phenomenon. This is particularly true concerning interactions with immigrant physicians who are learners of the patient’s language; there is a lack of research even though labour migration is increasing internationally. This conversation analytical study focusses on language errors in one specific type of doctor-patient interaction, namely pre-anaesthesia evaluations with immigrant anaesthetists.
Methods
The study combines the research field of language acquisition with that of medical interaction. It is a qualitative study with an ethnomethodological framework which addresses the following research question: How do language errors, produced by immigrant anaesthetists, impact pre-anaesthesia evaluations? The primary data comes from naturally occurring pre-anaesthesia evaluations carried out by immigrant anaesthetists. The analysis method is a combination of conversation and error analysis.
Results
The study shows that the anaesthetists produced a considerable number of unintelligible utterances, due to various language errors. Despite the lack of understanding, hardly any negotiation of meaning occurred and both sides (anaesthetists and patients) claimed to be satisfied.
Conclusions
The findings appear to be contradictory. An explanation for this can be found in the effect of the roles and scripts that are given in pre-anaesthesia evaluations. Since no negotiation of meaning is initiated during the interactions, the anaesthetists’ insufficient language competence leads to a considerable impairment of informed consent, which is the main goal of the pre-anaesthesia evaluations. Based on these findings, the study reveals an urgent need for action regarding immigrant anaesthetists’ language skills.

Paternal consent in prenatal research: ethical aspects
Mats Johansson, Göran Hermerén, Nils-Eric Sahlin
Medicine, Health Care and Philosophy, 10 August 2019; pp 1–7
Open Access
Abstract
The role of mothers in prenatal research has been discussed extensively. Significantly less work has been done on the father’s role. In this article, focusing on ethical issues, we seek to redress this imbalance. Examining the father’s position in research conducted on pregnant women, we ask whether or not paternal consent ought to be required in addition to that of the pregnant woman. Having distinguished between different concepts of father and mother, we proceed by giving an overview of the reasons for requiring consent of the woman who is carrying the child. We then examine which of these reasons apply to the biological father, and show that some of them are relevant to the father. The case, roughly speaking, revolves around privacy issues, the father’s future legal responsibilities, and the likelihood that he will care about the health and wellbeing of his future child. These factors in the decision problem should all be recognized, as should the fact that they can in principle be trumped by other considerations.

Ethical dilemmas in social media health research [CONFERENCE ABSTRACT]
Dan Wolf Meyrowitsch, Jacob Lauge Thomassen, Flemming Konradsen, Natasja Kingod, Jane Brandt Sørensen
The Digitally Engaged Patient, 11-12 June 2019; Copenhagen, Denmark
Abstract
An increasing number of individuals worldwide engage in online communication concerning human health and researchers have identified the need to gain further insights on how individuals and communities engage and respond to particular health topics discussed on social media. However, this type of research is not without ethical dilemmas. Though ethical guidelines on the conduct of online research do exist, there is a lack of practical tools and procedures for the initiation and implementation of research on social media platforms in a thoughtful and respectful manner. When carrying out research involving human subjects, three ethical concepts are central: 1) confidentiality; 2) anonymity; and 3) informed consent. These dimensions need rethinking when conducting research on social media platforms. For instance, a researcher stepping into a social media community would initially present herself, the objective of the research, and implications for participants – as in any other research project. However, it is a challenge to maintain informed consent to a study in a rapidly changing online community with a changing composition of members. Based on hands-on experiences from an ongoing research project in a Danish Facebook group of users and group administrators living with suicidal thoughts, we have encountered a range of challenges related to all three ethical concepts. These challenges have lead us to explore new paths and solutions. In this presentation, we will share our experiences and reflections.