Is It Time to Re-Evaluate the Ethics Governance of Social Media Research?

This article reports on a U.K. workshop on social media research ethics held in May 2018. There were 10 expert speakers and an audience of researchers, research ethics committee members, and research institution representatives. Participants reviewed the current state of social media ethics, discussing well-rehearsed questions such as what needs consent in social media research, and how the public/private divide differs between virtual and real-life environments. The lack of answers to such questions was noted, along with the difficulties posed for ethical governance structures in general and the work of research ethics committees in particular. Discussions of these issues enabled the creation of two recommendations. The first is for research ethics committees and journal editors to add the category of ‘data subject research’ to the existing categories of ‘text research’ and ‘human subject research’. This would reflect the fact that social media research does not fall into either of the existing categories and so needs a category of its own. The second is that ethical issues should be considered at all stages of social media research, up to and including aftercare. This acknowledges that social media research throws up a large number of ethical issues throughout the process which, under current arrangements for ethical research governance, risks remaining unaddressed.

Download Full-text

Alzheimer Disease Ethics—Informed Consent and Related Issues in Clinical Trials: Results of a Survey Among the Members of the Research Ethics Committees in Sweden

International Psychogeriatrics ◽

10.1017/s1041610203008846 ◽

2003 ◽

Vol 15 (2) ◽

pp. 157-170 ◽

Cited By ~ 8

Author(s):

Gunbrith Peterson ◽

Anders Wallin

Keyword(s):

Informed Consent ◽

Research Ethics ◽

Ethical Issues ◽

Ethics Committees ◽

Informed Consent Process ◽

Research Ethics Committees ◽

Biomedical Sciences ◽

Men And Women ◽

Decision Making Capacity ◽

Participation In Research

The rapid advances in biomedical sciences have induced special moral and ethical attitudes, which ought to be taken into account. One of the most essential issues is the principles for participation in research of subjects with reduced decision-making capacity. We conducted a questionnaire survey among members of the research ethics committees in Sweden to find out their attitudes to a range of ethical issues related to research on subjects with Alzheimer's disease. One hundred thirty-six of those approached responded (66%), and 117 of the responses (56%) were considered substantially complete. There were 16 questions with fixed reply alternatives. Some central questions concerned the informed consent process. With a few exceptions, there were no significant differences in attitudes between the experts and laypersons, between persons of different ages, and between men and women. However, women and laypersons were in general keener to preserve the patient's integrity and the experts were more willing than the laypersons to allow participation of subjects with dementia in placebo-controlled trials.

Download Full-text

Negotiating Responsibility for Navigating Ethical Issues in Qualitative Research: A Review of Miller, Birch, Mauthner, and Jessop’s (2012) Ethics in Qualitative Research, Second Edition

The Qualitative Report ◽

10.46743/2160-3715/2013.1427 ◽

2015 ◽

Author(s):

Michelle McCarron

Keyword(s):

Qualitative Research ◽

Research Ethics ◽

Ethical Issues ◽

Ethics Committees ◽

Institutional Review Boards ◽

Research Ethics Committees ◽

The United Kingdom ◽

Institutional Review ◽

Technological Advances ◽

Research Ethics Boards

Ethics in Qualitative Research (Miller, Birch Mauthner, & Jessop, 2012), now in its second edition, uses a feminist framework to present a variety of issues pertinent to qualitative researchers. Topics include traditional challenges for qualitative researchers (e.g., access to potential participants, informed consent, overlapping roles), as well as those that have garnered more attention in recent years, particularly with regard to uses and consequences of technological advances in research. The book is critical of committees whose function it is to review proposed research and grant research ethics approval (e.g., University Research Ethics Committees [URECs], Research Ethics Boards [REBs], and Institutional Review Boards [IRBs]). The authors of this book are situated within the United Kingdom. The editors take the position that ethics oversight by the researchers themselves is preferable and that such boards and committees are not well equipped to review qualitative research. A rebuttal to this position is presented within this review. Ethics in Qualitative Research provides a good overview of ethical issues that researchers face and is effective in merging theory with practice. It would be strengthened by avoiding the debate over URECs or by offering concrete suggestions for how URECs can improve their reviews of qualitative research.

Download Full-text

Social media models, technologies, and applications

Industrial Management & Data Systems ◽

10.1108/imds-03-2015-0075 ◽

2015 ◽

Vol 115 (5) ◽

pp. 769-802 ◽

Cited By ~ 93

Author(s):

Eric W.T. Ngai ◽

Ka-leung Karen Moon ◽

S.S. Lam ◽

Eric S. K. Chin ◽

Spencer S.C. Tao

Keyword(s):

Social Media ◽

Literature Review ◽

Conceptual Framework ◽

Real Life ◽

Content Type ◽

Behavior Theories ◽

Media Research ◽

Social Media Research ◽

Media Applications

Purpose – In recent years, social media have attracted considerable attention. Hence, the purpose of this paper is to conduct a critical literature review of social media research with the aim of developing a conceptual framework to explain how social media applications are supported by various social media tools and technologies and underpinned by a set of personal and social behavior theories or models. Design/methodology/approach – This study adopted a two-stage approach. The first stage involves a critical literature review of academic journals in social media research, followed by the proposal of a conceptual framework that highlights the tools and technologies as well as theories and models that serve as the foundation of social media applications. The second stage involves the use of an actual case to demonstrate how the proposed framework facilitates the development of a social media application for a regional division of an international non-government organization. Findings – The literature review indicated that social media have been applied in diverse business areas with the support of various social media tools and technologies and underpinned by a range of personal and social behavior theories and models. Based upon such findings, a conceptual social media application framework was devised and its usability illustrated via a real-life case study. Managerial implications are also discussed. Research limitations/implications – Social media covers a wide range of research topics and thus, the literature review presented in this study may not be exhaustive. Nevertheless, the proposed framework and case study can both serve as reference for future research and provide recommendations for practitioners in the design and development of their own social media applications. Practical implications – This study not only explains the importance of applying social media in various business sectors, but also enhances the understanding of the infrastructure of social media applications. The study also provides insights for improving the efficiency of application solutions. Organizations are advised to adopt social media in their business based on the proposed conceptual framework. Originality/value – With a literature review of social media research and a real-life case study, this study presents a conceptual framework using extant theories and models to form a foundation for social media applications. The framework extends existing knowledge on the design and development of information systems.

Download Full-text

Correction to: Regulatory, scientific, and ethical issues arising from institutional activity in one of the 90 Italian Research Ethics Committees

BMC Medical Ethics ◽

10.1186/s12910-021-00621-7 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

G. Benfatto ◽

◽

F. Drago ◽

Keyword(s):

Research Ethics ◽

Ethical Issues ◽

Ethics Committees ◽

Research Ethics Committees

An amendment to this paper has been published and can be accessed via the original article.

Download Full-text

Regulating Research: The Origins and Institutionalization of Research Ethics Committees in Sweden

European Journal for the History of Medicine and Health ◽

10.1163/26667711-bja10006 ◽

2021 ◽

pp. 1-20

Author(s):

Helena Tinnerholm Ljungberg

Keyword(s):

Medical Research ◽

Research Ethics ◽

Ethical Issues ◽

Ethics Committees ◽

Medical Community ◽

Ethical Review ◽

Research Ethics Committees ◽

Karolinska Institute ◽

Swedish Society ◽

The 1960S

Abstract The year 1966 saw the birth of Sweden’s first formal Research Ethics Committee (rec) at the medical university Karolinska Institute (ki). In the following years other ethical committees were institutionalized, coordinated by a working group steered by the Swedish Medical Research Council (smrc). Research ethical issues of a principled nature were also discussed by the Ethics Delegation of the Swedish Society of Medicine (ssm). Between 1966 and 1975, around 500 research proposals were assessed by rec s in Sweden, and the medical community started to follow certain protocols when preparing applications for ethical review. This paper traces the origins and early development of the rec system in Sweden and offers an analysis of their practices, discussions, and assessments through the reading of meeting protocols and correspondence between central actors. The aim is to sketch out how and why the system of research ethics committees emerged, became institutionalized, and developed in Sweden from the 1960s to the early 1980s. This paper connects to the recent empirical turn in historical research on medical research ethics and regulations, by focusing on how the insiders, i.e., the medical community, reacted to new demands of ethical review. The analysis illustrates how the medical researchers interacted with transnational funders, the Patients Association, a broader public, governmental authorities, and parliamentary politics when developing the Swedish rec system.

Download Full-text

Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders

Clinical Ethics ◽

10.1177/1477750918802420 ◽

2018 ◽

Vol 13 (4) ◽

pp. 194-198

Author(s):

D Carrieri ◽

L Jackson ◽

C Bewshea ◽

B Prainsack ◽

J Mansfield ◽

...

Keyword(s):

Research Ethics ◽

Support Groups ◽

Healthcare Professionals ◽

Ethical Issues ◽

Ethics Committees ◽

Genomic Research ◽

Research Ethics Committees ◽

Patient Support ◽

Research Teams ◽

The Uk

Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.

Download Full-text

Informed Consent: Is it Sacrosanct?

Research Ethics ◽

10.1177/174701610500100302 ◽

2005 ◽

Vol 1 (3) ◽

pp. 77-83 ◽

Cited By ~ 1

Author(s):

Alison Assiter

Keyword(s):

Informed Consent ◽

Medical Ethics ◽

Research Ethics ◽

Ethical Issues ◽

Personal Data ◽

Ethics Committees ◽

Research Ethics Committees ◽

Patient Consent ◽

Human Participants ◽

Alder Hey

Following Alder Hey and the earlier and much more extreme practices at Nuremberg, legislation has been developed governing the practice of medical ethics and research involving human participants more generally. In the medical context, relevant legislation includes GMC guidance, which states that disclosure of identifiable patient information without consent, for research purposes, is not acceptable unless it is justified in the public interest. There is a presumption, in other words, in favour of the view that patient consent ought to be obtained before any piece of research is conducted. The Data Protection Act, furthermore, requires informed consent to be given before any use of identifiable personal data is made for any purpose. Moreover, ensuring that the informed consent of participants is gained is common practice on most research ethics committees. I argue, in this paper, that applying the principle of ‘informed consent’ too mechanistically in the research ethics context risks undermining the very principle it is designed to support – the principle of autonomy. This issue has been much discussed in medical ethics but not so much, so far, in the research ethics context. It will be argued that a more discerning and a less rigid and mechanistic approach, applied by research ethics committees, may help ensure that ethical issues are properly considered.

Download Full-text

Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community (Preprint)

10.2196/preprints.11985 ◽

2018 ◽

Author(s):

Emil Chiauzzi ◽

Paul Wicks

Keyword(s):

Social Media ◽

Informed Consent ◽

Research Network ◽

Media Ethics ◽

Computer Data ◽

Social Media Data ◽

Media Research ◽

Social Media Research ◽

Media Data ◽

Review Boards

UNSTRUCTURED With the expansion and popularity of research on websites such as Facebook and Twitter, there has been increasing concern about investigator conduct and social media ethics. The availability of large data sets has attracted researchers who are not traditionally associated with health data and its associated ethical considerations, such as computer and data scientists. Reliance on oversight by ethics review boards is inadequate and, due to the public availability of social media data, there is often confusion between public and private spaces. In addition, social media participants and researchers may pay little attention to traditional terms of use. In this paper, we review four cases involving ethical and terms-of-use violations by researchers seeking to conduct social media studies in an online patient research network. These violations involved unauthorized scraping of social media data, entry of false information, misrepresentation of researcher identities of participants on forums, lack of ethical approval and informed consent, use of member quotations, and presentation of findings at conferences and in journals without verifying accurate potential biases and limitations of the data. The correction of these ethical lapses often involves much effort in detecting and responding to violators, addressing these lapses with members of an online community, and correcting inaccuracies in the literature (including retraction of publications and conference presentations). Despite these corrective actions, we do not regard these episodes solely as violations. Instead, they represent broader ethical issues that may arise from potential sources of confusion, misinformation, inadequacies in applying traditional informed consent procedures to social media research, and differences in ethics training and scientific methodology across research disciplines. Social media research stakeholders need to assure participants that their studies will not compromise anonymity or lead to harmful outcomes while preserving the societal value of their health-related studies. Based on our experience and published recommendations by social media researchers, we offer potential directions for future prevention-oriented measures that can be applied by data producers, computer/data scientists, institutional review boards, research ethics committees, and publishers.

Download Full-text