Ensuring Privacy of Participants Recruited via Social Media

2018 ◽  
Vol 10 (4) ◽  
pp. 16-32
Author(s):  
Chandana Unnithan ◽  
Paula M Swatman ◽  
Jo-Anne Kelder
Keyword(s):  
Social Media ◽  
Ethical Challenges ◽  
Human Research ◽  
Research Participants ◽  
Privacy Law ◽  
Human Research Ethics ◽  
Novel Approach ◽  
National Human ◽  
Ethics Guidelines ◽  
Research Ethics Guidelines

Researchers worldwide are increasingly looking to recruit research participants via social media (particularly @Facebook and @Twitter) because they appear to offer access to a wider range of research participants and afford inherently convenient tools for recruitment. In Australia, the National Statement on Ethical Conduct in Human Research, together with the federal Privacy law and a number of state-based privacy statutes, provide support and guidance for this novel approach. This article offers a preliminary analysis and discussion of this trend from an Australian perspective, illustrated by an enquiry into the ethical challenges posed by social media-based recruitment, conducted in an Australian university in 2015. Leximancer™ was used as an analytical tool and the content from social media sites used for a small number of research studies conducted up to 2015, taken in conjunction with the various national human research ethics guidelines, offered a means of understanding how ethical challenges of privacy and anonymity can be addressed for responsible social media-based research.

Ensuring Privacy of Participants Recruited via Social Media

2020 ◽  
pp. 1537-1555
Author(s):  
Chandana Unnithan ◽  
Paula M Swatman ◽  
Jo-Anne Kelder
Keyword(s):  
Social Media ◽  
Ethical Challenges ◽  
Human Research ◽  
Research Participants ◽  
Privacy Law ◽  
Human Research Ethics ◽  
Novel Approach ◽  
National Human ◽  
Ethics Guidelines ◽  
Research Ethics Guidelines

Researchers worldwide are increasingly looking to recruit research participants via social media (particularly @Facebook and @Twitter) because they appear to offer access to a wider range of research participants and afford inherently convenient tools for recruitment. In Australia, the National Statement on Ethical Conduct in Human Research, together with the federal Privacy law and a number of state-based privacy statutes, provide support and guidance for this novel approach. This article offers a preliminary analysis and discussion of this trend from an Australian perspective, illustrated by an enquiry into the ethical challenges posed by social media-based recruitment, conducted in an Australian university in 2015. Leximancer™ was used as an analytical tool and the content from social media sites used for a small number of research studies conducted up to 2015, taken in conjunction with the various national human research ethics guidelines, offered a means of understanding how ethical challenges of privacy and anonymity can be addressed for responsible social media-based research.

Emotions in human research ethics guidelines: Beyond risk, harm and pathology

2021 ◽  
pp. 146879412110399
Author(s):  
Rebecca E Olson
Keyword(s):  
Research Ethics ◽  
The Other ◽  
Vulnerable Groups ◽  
Human Research ◽  
Rational Decision Making ◽  
Human Research Ethics ◽  
The United Kingdom ◽  
National Human ◽  
Ethics Guidelines ◽  
Research Ethics Guidelines

Drawing on a discourse analysis of emotions in national human research ethics guidelines from Australia, Singapore, the United Kingdom and United States, I argue that such guidelines treat emotions as superfluous, harmful, risky and threats to rational decision-making. Such uncritical appreciation of emotions sees instructions to show ‘respect’ position non-Western participants as ‘the other’, sees directives to consider ‘emotional welfare’ undermine the autonomy of people from ostensibly vulnerable groups, and risks undermining qualitative research’s cathartic potential. These findings underpin a call to revise guidelines to position emotions as part of everyday life; and to encourage researchers to adopt embodied, caring and emotionally reflexive approaches to human research, where researchers draw on guidelines and emotions in deciding how to produce ethical research.

scholarly journals Mining social media data: How are research sponsors and researchers addressing the ethical challenges?

2017 ◽  
Vol 14 (2) ◽  
pp. 1-39 ◽  
Author(s):  
Joanna Taylor ◽  
Claudia Pagliari
Keyword(s):  
Social Media ◽  
Health Research ◽  
Social Research ◽  
International Association ◽  
Academic Community ◽  
Ethical Challenges ◽  
Ethical Considerations ◽  
Social Media Data ◽  
Ethics Guidelines ◽  
Media Data

Background: Data representing people’s behaviour, attitudes, feelings and relationships are increasingly being harvested from social media platforms and re-used for research purposes. This can be ethically problematic, even where such data exist in the public domain. We set out to explore how the academic community is addressing these challenges by analysing a national corpus of research ethics guidelines and published studies in one interdisciplinary research area. Methods: Ethics guidelines published by Research Councils UK (RCUK), its seven-member councils and guidelines cited within these were reviewed. Guidelines referring to social media were classified according to published typologies of social media research uses and ethical considerations for social media mining. Using health research as an exemplar, PubMed was searched to identify studies using social media data, which were assessed according to their coverage of ethical considerations and guidelines. Results: Of the 13 guidelines published or recommended by RCUK, only those from the Economic and Social Research Council, the British Psychological Society, the International Association of Internet Researchers and the National Institute for Health Research explicitly mentioned the use of social media. Regarding data re-use, all four mentioned privacy issues but varied with respect to other ethical considerations. The PubMed search revealed 156 health-related studies involving social media data, only 50 of which mentioned ethical concepts, in most cases simply stating that they had obtained ethical approval or that no consent was required. Of the nine studies originating from UK institutions, only two referred to RCUK ethics guidelines or guidelines cited within these. Conclusions: Our findings point to a deficit in ethical guidance for research involving data extracted from social media. Given the growth of studies using these new forms of data, there is a pressing need to raise awareness of their ethical challenges and provide actionable recommendations for ethical research practice.

scholarly journals National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden

2015 ◽  
Vol 26 (7) ◽  
pp. 586-606 ◽  
Author(s):  
Bernard Gallagher ◽  
Anne H. Berman ◽  
Justyna Bieganski ◽  
Adele D. Jones ◽  
Liliana Foca ◽  
...  
Keyword(s):  
Great Britain ◽  
Research Ethics ◽  
Comparative Case Study ◽  
Human Research ◽  
Human Research Ethics ◽  
National Human

scholarly journals Ethical concerns in suicide research: thematic analysis of the views of human research ethics committees in Australia

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Emma Barnard ◽  
Georgia Dempster ◽  
Karolina Krysinska ◽  
Lennart Reifels ◽  
Jo Robinson ◽  
...  
Keyword(s):  
Research Ethics ◽  
Thematic Analysis ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Human Research ◽  
Related Research ◽  
Ethical Concerns ◽  
Human Research Ethics

Abstract Background Suicide research aims to contribute to a better understanding of suicidal behaviour and its prevention. However, there are many ethical challenges in this research field, for example, regarding consent and potential risks to participants. While studies to-date have focused on the perspective of the researchers, this study aimed to investigate the views and experiences of members of Human Research Ethics Committees (HRECs) in dealing with suicide-related study applications. Methods This qualitative study entailed a thematic analysis using an inductive approach. We conducted semi-structured interviews with a purposive sample (N = 15) of HREC Chairs or their delegates from Australian research-intensive universities. The interview guide included questions regarding the ethical concerns and challenges in suicide-related research raised by HREC members, how they dealt with those challenges and what advice they could give to researchers. Results The analysis identified four main themes: (1) HREC members’ experiences of reviewing suicide-related study applications, (2) HREC members’ perceptions of suicide, suicide research, and study participants, (3) Complexity in HREC members’ decision-making processes, and (4) HREC members’ relationships with researchers. Conclusions Reliance on ethical guidelines and dialogue with researchers are crucial in the assessment of suicide-related study applications. Both researchers and HREC members may benefit from guidance and resources on how to conduct ethically sound suicide-related studies. Developing working relationships will be likely to help HRECs to facilitate high quality, ethical suicide-related research and researchers to conduct such research.

Reflexivity in Research Practice: Informed Consent with Children at School and at Home

2008 ◽  
Vol 13 (4) ◽  
pp. 17-30 ◽  
Author(s):  
Hayley Davies
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethical Issues ◽  
Research Process ◽  
Research Practice ◽  
Ethical Practices ◽  
Research Participants ◽  
Ethical Approach ◽  
Ethics Guidelines ◽  
Research Ethics Guidelines

Informed consent is a key consideration in ethical research, particularly research conducted with children. Devising an approach to and obtaining informed consent is a complex task involving multiple considerations. The examples used in this paper are derived from a study investigating how children constitute family members and close relationships. The paper is divided into two sections. The first section suggests that researchers should take a reflexive approach to their professional research practice and addresses how a researcher's professional location determines their particular ethical approach. Consideration is given to how the researcher's particular ethical approach can be achieved in consultation with academic thought and research ethics guidelines, which often offer contradictory advice on important ethical issues. The second section of the paper addresses how researchers negotiate their approach to informed consent in particular research contexts which offer challenges to the researcher's thinking about research participants or chosen procedures for obtaining and maintaining that informed consent is upheld. The paper concludes by arguing that the researcher can incorporate academic thought and aspects of the research ethics guidelines in an approach to informed consent that simultaneously values the research participants and the ethical practices operating in the research setting. Such an approach involves careful negotiation and consideration of the interests of all stakeholders in the research process.

scholarly journals Facebook Recruitment and the Protection of Human Subjects

2019 ◽  
Vol 41 (9) ◽  
pp. 1270-1281 ◽  
Author(s):  
Kendra Kamp ◽  
Kayla Herbell ◽  
William H. Magginis ◽  
Donna Berry ◽  
Barbara Given
Keyword(s):  
Social Media ◽  
Data Security ◽  
Human Subjects ◽  
Ethical Principles ◽  
Belmont Report ◽  
Respect For Persons ◽  
Ethical Challenges ◽  
Recruitment Method ◽  
Research Participants ◽  
Protection Of Human Subjects

Social and behavioral scientists increasingly use Facebook to recruit research participants. Given the everchanging social media landscape, it is important to consider the ethical principles of using such a strategy. The aims of this methodological article are to (a) examine Facebook recruitment in light of the ethical principles of the Belmont Report (respect for persons, beneficence, and justice), (b) describe ethical challenges that may be faced in Facebook recruitment, and (c) provide recommendations for researchers interested in adopting this recruitment method. Ethical challenges inherent in Facebook recruitment include selecting subjects fairly, privacy, and data security. Overall, Facebook is a beneficial resource for recruiting participants into research; however, researchers need to be aware of their responsibility in protecting human subjects.

Informed consent in cluster randomised trials: new and common ethical challenges

2017 ◽  
Vol 44 (2) ◽  
pp. 114-120 ◽  
Author(s):  
Sapfo Lignou
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Population Based ◽  
Ethical Challenges ◽  
Randomised Trials ◽  
Cluster Randomised Trials ◽  
Cluster Randomised ◽  
Two Factors ◽  
Ethics Guidelines ◽  
Research Ethics Guidelines

Cluster randomised trials are an increasingly important methodological tool in health research but they present challenges to the informed consent requirement. In the relatively limited literature on the ethics of cluster research there is not much clarity about the reasons for which seeking informed consent in cluster randomised trials may be morally challenging. In this paper, I distinguish between the cases where informed consent in cluster trials may be problematic due to the distinct features of ‘population-based’ interventions, which have not been adequately discussed in the research ethics literature, and the cases where informed consent may be problematic for reasons that investigators also encounter in other research designs. I claim that informed consent requirements in cluster trials should be adjusted to the level of risk involved, arguing for a more comprehensive notion of research risk than that currently found in the research ethics guidelines, and the amount of freedom to be sacrificed in relation to a particular research aim. I conclude that these two factors are the most important to consider when assessing whether a cluster study should proceed when informed consent is infeasible or difficult to obtain.

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