ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)
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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The Ethics and Politics of Qualitative Data Sharing0

 

Mark Israel (AHRECS and Murdoch University) and Farida Fozdar (The University of Western Australia).

There is considerable momentum behind the argument that public data is a national asset and should be made more easily available for research purposes. In introducing the Data Sharing and Release Legislative Reforms Discussion Paper in September 2019, the Australian Commonwealth Minister for Government Services argued that proposed changes to data use in the public sector would mean that

Australia’s research sector will be able to use public data to improve the development of solutions to public problems and to test which programs are delivering as intended—and which ones are not.

Data reuse is seen as a cost-efficient use of public funds, reducing the burden on participants and communities. And, the argument is not restricted to government.  Journals, universities and funding agencies are increasingly requiring social scientists to make their data available to other researchers, and even to the public, in the interests of scientific inquiry, accountability, innovation and progress. For example, the Research Councils United Kingdom (RCUK) takes the benefits associated with data sharing for granted

Publicly-funded research data are a public good, produced in the public interest; Publicly-funded research data should be openly available to the maximum extent possible.

In Australia, both the National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC) have adopted open access policies that apply to research funded by those councils. While the ARC policy only refers to research outputs and excludes research data and research data outputs, the NHMRC strongly encourages open access to research data.

And yet, several social researchers have argued that data sharing requirements, developed in the context of medical research using quantitative data, may be inappropriate for qualitative research. Their arguments rest on a mix of ethical, practical and legal grounds.

In an article entitled ‘Whose Data Are They Anyway?’, Parry and Mauthner (2004) recognised unique issues associated with archiving qualitative data. The main considerations are around confidentiality (is it possible to anonymise the data by changing the details without losing validity) and informed consent (can participants know and consent to all potential future uses of their data at a single point in time?, and alternatively what extra burden do repeated requests for consent place on participants?).

There is also the more philosophical issue of the reconfiguration of the relationship between researchers and participants including moral responsibilities and commitments, potential violations of trust, and the risk of data misrepresentation. There are deeper epistemological issues, including the joint construction of qualitative data, and the reflexivity involved in preparing data for secondary analysis. As a result, Mauthner (2016) critiqued ‘regulation creep’ whereby regulators in the United Kingdom have made data sharing a moral responsibility associated with ethical research, when in fact it may be more ethical not to share data.

In addition, there is a growing movement to recognise the rights of some communities to control their own data. Based on the fundamental principle of self-determination, some Indigenous peoples have claimed sovereignty over their own data: ‘The concept of data sovereignty, … is linked with indigenous peoples’ right to maintain, control, protect and develop their cultural heritage, traditional knowledge and traditional cultural expressions, as well as their right to maintain, control, protect and develop their intellectual property over these.’ (Tauli-Corpuz, in Kukutai and Taylor, 2016:xxii). The goal is that its use should enhance self-determination and development.

To be fair to both the Commonwealth Minister and the RCUK, each recognises that data sharing should only occur prudently and safely and acknowledges that the benefits of sharing need to be balanced against rights to privacy (the balance proposed for earlier Australian legislative proposals have already been subjected to academic critique). The challenge is to ensure that our understanding of how these competing claims should be assessed is informed by an understanding of the nature of qualitative as well as quantitative data, of how data might be co-constructed or owned, of the cultural sensitivity that might be required to interpret and present it, and the damage that might be done as a result of misuse or  misrepresentation.

Acknowledgements
This article draws on material drafted for Fozdar and Israel (under review).
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References:

Fozdar, F. and Israel, M. (under review) Sociological ethics. In Mackay, D. and Iltis, A. (eds) The Oxford Handbook of Research Ethics. Oxford: Oxford University Press.

Kukutai, T. and Taylor, J. (Eds.) (2016) Indigenous data sovereignty: Toward an agenda (Vol. 38). Canberra: ANU Press.

Mauthner, N.S. (2016) Should data sharing be regulated? In van den Hoonard, W. and Hamilton, A. (eds) The Ethics Rupture: Exploring alternatives to formal research-ethics review. University of Toronto Press. pp.206-229.

Parry, O. and Mauthner, N.S. (2004) Whose data are they anyway? Practical, legal and ethical issues in archiving qualitative research data. Sociology, 38(1), 139-152.

This post may be cited as:
Israel, M. & Fozdar, F. (5 February 2020) The Ethics and Politics of Qualitative Data Sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-ethics-and-politics-of-qualitative-data-sharing

Should we Reframe Research Ethics as a Professional Ethics?0

 

Dr Nathan Emmerich
Research Fellow in Bioethics at ANUMS

Despite the fact that one of the urtexts of bioethics—Beauchamp and Childress’ principles of biomedical ethics—offers a set of concepts that purport to apply to both research and medical practice it is nevertheless the case that we standardly contrast research ethics with professional ethics. The operating presumption seems to be that a proper grasp of professional ethics requires an understanding of the unique role professional’s play, whereas the same cannot be said of research ethics. Here the presumption is that researchers are not unique but interchangeable. Furthermore, their individuality is inimical to good, and therefore ethical, research.

Whilst both healthcare professionals and researchers should be objective, the professional enters into a singular relationship with their patients. The position of the researcher can, however, be occupied by any relevantly qualified individual and their function is to report their scientific observations. Thus, underlying this contrast is an epistemological point. The perceived importance of the relationship between doctors and patients means that whilst the ethics of the preeminent profession, medicine, are predicated on professionalism they are equally predicated on something that is distinctively (inter)personal. In contrast, the notion that there might be an (inter)personal dimension to the relationship between researchers and research participants is inimical to the requirement for objectivity, at least for a certain value of objectivity.

COMMENTARY
Nik Zeps, AHRECS

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In this thought-provoking blog, Nathan Emmerich challenges the notion that there is any distinction between research ethics and professional ethics when it comes to social science research. That is, the very nature of the enterprise requires that the researcher be deeply engaged in ethical discourse throughout the conduct of the study and not simply at a point in time to satisfy the regulatory requirements of ethics committees to obtain their approval. Whilst the argument is reserved for the social sciences, and there is some hesitancy to extend it beyond this, it is clear that the arguments made are true for all research, including biomedical. There is a reluctance to challenge notions about the divide between research and clinical practice that have been with us for over 50 years, but perhaps it is time to have a proper discussion about whether this is or is not applicable any longer. Patient centered research with an emphasis on co-design with consumers upends the notion that this type of research maintains a separation between researchers and research participants. Social science research provides an immediate opportunity for rethinking how we behave ethically, but biomedical research should follow hot on the heels.

Therein, of course, lies the rub. According to Stark, the differentiation between research ethics and professional ethics can be traced to the National Institute of Health, Bethesda, Maryland, USA, circa 1950. Given the existing competition between the codes of professional ethics promulgated by medicine’s sub-specialties, the nascent idea of a research ethics was conceived pragmatically and in aprofessional terms. When it came to biomedical research, and the epistemology of the natural sciences, this was not an issue. However, consistent with Schrag’s critique of the subsequent development of research ethics as neglecting concerns expressed by social scientists, this is more problematic when it comes to the social sciences, particularly at the more interpretive end of the spectrum.
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In qualitative social science the unique perspective, position or standpoint of the researcher is essential to understanding socio-cultural reality and, therefore, to the process of conducting research. Furthermore, it is not something that can be eliminated by the use of (replicable) quantitative measures. This does not mean qualitative research cannot be objective. Rather, it means that the notion of objectivity differs between the natural and social sciences. Doing qualitative social science does not mean embracing subjectivity. Rather, it requires qualitative researchers to embrace epistemological reflexivity and to aim at objectivity as a value, virtue, or standpoint of social research.
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When this is coupled with the fact that such research often seeks to give expression to the ‘lived experience’ of research participants, one can see how a concern for the (inter)personal must return to center stage in discussions of social scientific research ethics. One way of doing so would be to rethink the ethics of social scientific research as a form of professional ethics. Thus, rather than simply ‘frontloading’ ethical decision-making as a part of the design of proposed research, which can then be subject to peer review or evaluation by committee, we can more clearly acknowledge that engaging with the ethical dimension of research requires ongoing attention. The range of ethical issues researchers might encounter, both in the field and as a function of their role, are such that we cannot hope to fully address them preemptively. In this context, and consistent with the contemporary concern for the integrity of both research and researchers, we might draw on the idea of researchers as professionals and, in so doing, embrace the view that they ought to be guided by a set of internal professional norms or ethics.
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Of course, this is not exactly a solution to the ethical issues social scientists might encounter in the course of research. It does, however, invite further engagement with such questions. Indeed, one can say more than this. Rather than thinking of the ethics of research as something to be addressed and codified by external commentators, such as bioethicists, the idea that research might benefit from a professional ethics invites researchers themselves to lead the discussion. No doubt questions remain, not least on what might constitute a profession or professional group in this context. Nevertheless, this proposal suggests that both professional groups and professional researchers should play a privileged role in creating, interpreting and putting into practice the substantive commitments of their own professional ethics. Furthermore, it is for them to set forth, justify and communicate the stance they adopt to other stakeholders.
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This suggestion stands in relatively stark contrast to conceptions of research ethics, where external standards and evaluations are seen as having priority. To me, the difference is akin to the one we find when comparing research ethics committees and clinical ethics committees. The former tends to be rather one-sided; it assesses and offers judgment on research proposals or documents. The latter engages with professional actors and, through a process of mutual dialogue and discussion, facilitates and contributes to the individual’s own ethical formations. Which approach is more likely to promote the ethics and integrity of research, particularly social scientific research, seems self-evident.
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Dr Nathan Emmerich is a Research Fellow in Bioethics at ANUMS. The ideas presented in this post stem from a book chapter entitled ‘A Professional Ethics for Researchers?’ (online first) recently published in Iphofen (Ed) Handbook of Research Ethics and Scientific Integrity (Springer) as well as an earlier publication ‘Reframing Research Ethics.

References:

Beauchamp, T.L., and J.F. Childress. 2009 [1979]. Principles of Biomedical Ethics. 6th Edition. Oxford, UK: Oxford University Press.

Emmerich, N. 2016 ‘Reframing Research Ethics: Towards a Professional Ethics for the Social Sciences’. Sociological Research Online 21(4):7 http://www.socresonline.org.uk/21/4/7.html

Emmerich, N. 2019. ‘A Professional Ethics for Researchers?’ In Iphofen, R. (Ed) Handbook of Research Ethics and Scientific Integrity. Springer. Online First: https://doi.org/10.1007/978-3-319-76040-7_34-1

Iphofen, R. (Ed) Forthcoming 2020. Handbook of Research Ethics and Scientific Integrity. Springer, https://link.springer.com/referencework/10.1007/978-3-319-76040-7

Stark, L. 2011. Behind Closed Doors: IRBs and the Making of Ethical Research. University of Chicago Press. https://www.press.uchicago.edu/ucp/books/book/chicago/B/bo12182576.html

Schrag, Z.M. 2010. Ethical Imperialism: Institutional Review Boards and the Social Sciences, 1965–2009. The Johns Hopkins University Press. https://jhupbooks.press.jhu.edu/title/ethical-imperialism

This post may be cited as:
Emmerich, N. (1 October 2019) Should we Reframe Research Ethics as a Professional Ethics? Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/should-we-reframe-research-ethics-as-a-professional-ethics

Sage Methods Minute. January Spotlight: Research Ethics0

 

January’s Methods Minutes, a monthly newsletter produced by Sage Publishing, is a special issue focused on social research ethics. It reviews two articles and one book from Sage’s extensive collection on research ethics and also links to an article by Janet Salmons on the importance of research ethics in an ethics-challenged world. Finally, it introduces a video of Mark Israel (AHRECS) discussing the importance of integrating ethical principles in the design of the project from the outset.

The full page can be seen at http://info.sagepub.com/q/1fcUbqkq9C2tGu15bd0Q65f/wv

Contributor
Dr Mark Israel. Senior Consultant AHRECS
AHRECS profilemark.israel@ahrecs.com

This post may be cited as:
Israel, M. (26 February 2019) Sage Methods Minute. January Spotlight: Research Ethics. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/sage-methods-minute-january-spotlight-research-ethics

AHRECS Human research ethics workshop in Thailand0

 

One of our consultants (Dr Lindsey Te Ata o Tu MacDonald) recently facilitated a seminar on research ethics in the department of politics and governance at Mahasarakham University, Thailand. After 5 minutes setting out the institutions and codes of Thailand, Lindsey’s session was a practical ‘how to guide’ on research ethics for students and staff. Lindsey has often been called on to give such talks as Chair of the New Zealand Ethics Committee (see nzethics.com) and in his earlier role as Chair of the University of Canterbury Human Ethics Committee. Interestingly, the way in which Lindsey asks researchers to ‘imaginative engage’ with the ethics of their project by asking them how they would design their project if their Grandmother wanted to participate, and it was a stranger doing the research – what Lindsey calls the ‘grandmother test’ – translated directly in to Thai, as the ‘Yai test’.

For more on ‘imaginative engagement’ see Guillemin, M., Gillam, L., Rosenthal, D., & Bolitho, A. (2008). Investigating human research ethics in practice: Project report. Melbourne, VIC, Australia: Centre for Health and Society, The University of Melbourne. , and For Lindsey’s first paper setting out the ‘grandmother test’ see. MacDonald, L. T. A. O. T. (2018). Ethics and Politics. In M. Tolich & C. Davidson (Eds.), Social Science Research in NZ (4th ed.). Auckland: University of Auckland Press.

Participants in the seminar on Ethics in human subject research at the College of Politics and Governance, Mahasarakham University, Thailand

Prof Cherngcharn Chongsomchai, Dean and Head of the College of Politics and Governance, debating a point with students and staff during the seminar.

Contributor
AHRECS Team | Our Services | engage@ahrecs.com

This post may be cited as:
MacDonald, L. T. A. O. T. (22 December 2018) AHRECS Human research ethics workshop in Thailand (2018). Research Ethics Monthly. Retrieved from: https://ahrecs.com/ahrecs-admin/ahrecs-human-research-ethics-workshop-in-thailand

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