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