Category: ethics

Promoting FAIR principles in the healthcare field

In December, the 3-year EU funded (Horizon 2020), pan-European project FAIR4Health was launched, and three weeks ago I attended its first general assembly in Seville. The overall objective of FAIR4Health is stated as “to facilitate and encourage …

Addressing ethical issues in peer review – new guidelines available from COPE

Ethical issues related to the peer review process are increasingly complex and can be tricky to navigate and resolve. This Peer Review Week 2017, COPE (the Committee on Publication Ethics) released a revised, updated version of its guidelines for editors, reviewers, and would-be reviewers. These expanded resources include more information for early-career researchers, as well as addressing some of the […]

Privacy and Academic Research

This guest blog is courtesy of Marlon Domingus, community lead research data management at Erasmus University Rotterdam. It reflects on their experience of supporting privacy in academic research, providing an infographic as a case study.

It is not easy to make a case against safeguarding privacy in general. As citizens we expect our government and the businesses we purchase services from, to take the necessary measures to protect the data we are willing to share with them, given a specific context.

In the same way citizens, patients, data subjects or any other terms we use for participants in our research, expect their data to be protected by the researcher. If we make privacy the default in our research design, and document this in our data management plan, we can manage the sharing of data post-research more easily. This data sharing helps to contribute to debates in society and enables responsible public-private collaboration.

So, no sensible person objects to safeguarding privacy, a basic right for all. But, this begs the question of HOW? Not only within your own research projects, but also within the collective entity we call the “university”. To paraphrase Robert Maynard Hutchins: ‘a university is not only a series of schools and departments held together by a central heating system’, but also by safeguarding privacy for students, faculty, staff and data subjects. This aspiration can be seen as a moral maxim to:

‘Act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end.’

— Immanuel Kant, Groundwork of the Metaphysics of Morals (1785)​​

The infographic provides a helicopter view on implementing privacy in academic research. The images lead to underlying information; the frog perspective of safeguarding privacy yourself. 

Please share your views and comments with Marlon

Privacy and Academic Research

This guest blog is courtesy of by Marlon Domingus, community lead research data management at Erasmus University Rotterdam. It reflects on their experience of supporting privacy in acadmeic research, provising a detailed inforgraphic as a case study.

It is not easy to make a case against safeguarding privacy in general. As citizens we expect our government and the businesses we purchase services from, to take the necessary measures to protect the data we are willing to share with them, given a specific context.

In the same way citizens, patients, data subjects or any other terms we use for participants in our research, expect their data to be protected by the researcher. If we make privacy the default in our research design, and document this in our data management plan, we can manage the sharing of data post-research more easily. This data sharing helps to contribute to debates in society and enables responsible public-private collaboration.

So, no sensible person objects to safeguarding privacy, a basic right for all. But, this begs the question of HOW? Not only within your own research projects, but also within the collective entity we call the “university”. To paraphrase Robert Maynard Hutchins: ‘a university is not only a series of schools and departments held together by a central heating system’, but also by safeguarding privacy for students, faculty, staff and data subjects. This aspiration can be seen as a moral maxim to:

‘Act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end.’

— Immanuel Kant, Groundwork of the Metaphysics of Morals (1785)​​

The infographic provides a helicopter view on implementing privacy in academic research. The images lead to underlying information; the frog perspective of safeguarding privacy yourself. 

Please share your views and comments with Marlon

Guest blog: Muriel Swijghuisen Reigersberg: Ethics and Research Data Management in Arts, Humanities and Social Science Research

“Completing the University’s EPSRC light-touch questionnaire on research data management (RDM) for Goldsmiths, University of London gave me some pause to reflect on Expectations vii and viii, which address the secure storage, appropriate sharing, archiving, maintenance and inventorying of data and what this means for my institution, which specialises in arts, humanities and social science research.

It gave me food for thought because Expectations vii and viii impact on research ethics in particular. If data is made openly available via the internet, economies of scale change significantly. So does the potential to (unintentionally) do harm, through accidentally or even unwittingly sharing the wrong type of data. Therefore data management plans must be included in research ethics applications and advice and training on appropriate sharing practices must be available to University staff in all lines of work, including professional service staff working in Libraries and IT if they are engaged in any form of RDM activity. So far so good, and dare I say, obvious, or so I thought. Not quite so, if you are working with academic staff specialising in the arts, humanities and social sciences (AHSS).

Firstly, it has to be acknowledged that AHSS researchers vary in their discipline-specific practices and that the term ‘data’ means different things to different researchers. Levels of awareness on how to appropriately and ethically manage data, if it is defined at all, also vary markedly.

The concept of ‘data’ is one alien to many researchers working in the AHSS sphere. They either find it an objectionable term in the sense that their ‘data’ is personal information about, interviews with and images of persons whom they might know quite well, such as in ethnomusicology and anthropology. Treating this information about persons as ‘data’ dehumanises them, it is felt. Alternatively, data might be creative works of art and the documentation of creative activities that form part of a research enquiry. Similarly, the fact that AHSS researchers often prefer to distinguish themselves from STEM (science, technology, engineering and mathematics) researchers means that the word ‘data’ is not associated with AHSS research outputs or the creative process and deliberately shunned. Hence many AHSS researchers consider RDM activities to be irrelevant to their research enquiry before, during and after their work has been completed.

This, despite the excellent work undertaken by JISC funded project KAPTUR, which sought to ‘discover, create and pilot a sectoral model of best practice in the management of research data in the visual arts’, for example. Equally, the helpful guidance painstakingly created by DCC through a case study at the Open University is currently rarely referenced or found instructive by AHSS researchers that I work with, because it does not focus specifically on definitions of what data is, or could be in a specific discipline.  Researchers have frequently told me they disengage with RDM activities because the language used does not reflect their disciplinary practice. Perhaps we should provide additional examples of what research data might look like in AHSS research and see whether alternative words might be used to describe products of practice-based research to help engage AHSS researchers with the RDM process.

Now, add to this the challenge of designing appropriate research ethics application forms, the aim of which should be to help researchers consider how they might appropriately share, archive and manage their research outputs and data. Traditionally, particularly arts and humanities scholars would conduct research that presented fewer ethical questions for consideration than perhaps those identified in bio-medical research. With the introduction of interdisciplinary research however, there are theatre researchers offering therapy workshops in Chinese political prisons; students in visual cultures wanting to interview the militia in countries with a dubious human rights track record and creative writers employing investigative journalism methodologies to help inform their latest research project on an actual murder enquiry.

The potential for sensitive data being collected during AHSS research here is enormous and the ethical imperative for managing it appropriately unquestionable. Here the challenge becomes two-fold: not only must we begin defining what research data is for AHSS researchers, we must also educate AHSS scholars about the need to manage their data sensitively through designing ethical approval forms that reflect models of data management not predicated on biomedical practice, language and definitions of data. Rather, we should design guidance that broadly reflects disciplinary differences whilst still ensuring the highest research integrity possible in RDM. Otherwise we risk further disengagement from the AHSS community, which, given the sensitivity of their data may – in some cases – do considerable social harm.”

Do you make or support AHSS research that faces these challenges?  How do you define research data in your practice?  Do you agree that ethics procedures are too closely modelled on STEM subject workflows and requirements?  Tell us in the comments!