A research blog from the Centre for Resarch Ethics & Bioethics (CRB)

Tag: ethics review

Challenges to academic diversity

Academic work is conducted in many ways and has many functions and values. Researchers in law and astrophysics, in philosophy and oceanography, work every day with completely different tasks and methods, and the value of their contributions can hardly be compared. At the same time, academic diversity is challenged by another diversity: the many needs to systematically map, review and evaluate academic work. When these two diversities do not meet, when the criteria used for assessments do not reflect academic diversity, this can challenge the conditions for academic work.

A few weeks ago, I blogged about an example of how academic work can be challenged by legitimate and important needs to review research: the Swedish system for ethical review of research. Representatives of the social sciences and humanities have criticized the system for being so focused on medical research that a researcher in the social sciences or humanities who neither conducts drug trials with human subjects nor tests hypotheses may have difficulty filling out the application form. Ethical review creates friction here and there because the system is not fully adapted to the diversity of academic work.

Another challenge to academic diversity is highlighted in an opinion piece by Tove Godskesen in the journal Learned Publishing. The challenge here is that academics themselves may unknowingly risk doing each other injustice when they publish so-called scoping reviews of research areas. Scoping reviews do not aim to assess the quality of the research conducted in the field. They only describe what has been written, which themes have been in focus, and identify knowledge gaps. Scoping reviews can have great value, for example when academics are planning new research. So how can such reviews challenge academic diversity?

Of course, they do not, if they are carried out correctly. The challenge that Tove Godskesen highlights is related to a proposal to use in scoping reviews a tool commonly used to assess the quality of evidence in empirical studies. The motive behind the proposal is to create transparency through a common standard for scoping reviews. The assessment tool also provides a measure of the quality of evidence in empirical studies. All of this sounds good, on the surface.

The problem is that scoping reviews do not aim to rate the quality of evidence in empirical studies. They map very broadly what has been written about different themes: not only in empirical studies but also in theoretical, conceptual and other forms of work. The literature described in scoping reviews is also varied: not only scientific publications can be the subject of scoping reviews, but also reports and policy documents.

Systematically using an evaluation tool that rates empirical evidence when conducting scoping reviews can thus challenge academic diversity and the conditions for academic work. How? A low score for a solid academic work that is not empirical but conceptual can be misunderstood as low academic quality. This can affect how readers, reviewers and editors perceive different disciplines and the value of different academic approaches, Tove Godskesen argues. What looks like systematic quality assessment inadvertently creates hierarchies within academia. Conceptually ill-considered empirical studies can end up higher in the hierarchy than insightful criticism of the central conceptual assumptions of the research area.

Read the opinion piece here: Scoping Reviews Should Describe – Not Score.

Tove Godskesen emphasizes that greater transparency in scoping reviews is important. However, introducing a standard tool that systematically rates empirical evidence risks challenging academic diversity and limiting the value of scoping reviews.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Godskesen, T. 2026. “Scoping Reviews Should Describe – Not Score.” Learned Publishing 39, no. 2: e2057. https://doi.org/10.1002/leap.2057

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Safeguards when biobank research complies with the General Data Protection Regulation

The General Data Protection Regulation (GDPR) entails a tightening of EU data protection rules. These rules do not only apply to the processing of personal data by companies. They apply in general, also to scientific research, which in many cases could entail serious restrictions on research. However, the GDPR allows for several derogations and exemptions when it comes to research that would otherwise probably be made impossible or considerably more difficult.

Such derogations are allowed only if appropriate safeguards, which are in accordance with the regulation, are in place. But what safeguards may be required? Article 89 of the regulation mentions technical and organizational measures to ensure compliance with the principle of data minimization: personal data shall be adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed. Otherwise, Article 89 does not specify what safeguards are required, or what it means that the safeguards must be in accordance with the GDPR.

Biobank and genetic research require large amounts of biological samples and health-related data. Personal data may need to be stored for a long time and reused by new research groups for new research purposes. This would not be possible if the regulation did not grant an exemption from the rule that personal data may not be stored longer than necessary and for purposes not specified at data collection. But the question remains, what safeguards may be required to grant exemption?

The issue is raised by Ciara Staunton and three co-authors in an article in Frontiers in Genetics. The article begins by discussing the regulation and how to interpret the requirement that the safeguards should be “in accordance with the GDPR.” Then six possible safeguards are proposed for biobank and genetic research. The proposal is based on a thorough review of a number of documents that regulate health research.

Here, I merely want to recommend reading to anyone working on the issue of appropriate safeguards in biobank and genetic research. Therefore, I mention only briefly that the proposed safeguards concern (1) consent, (2) independent review and oversight, (3) accountable processes, (4) clear and transparent policies and processes, (5) security, and (6) training and education.

If you want to know more about the proposed safeguards, you will find the article here: Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Ciara Staunton, Santa Slokenberga, Andrea Parziale and Deborah Mascalzoni. Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research. Frontiers in Genetics. 18 February 2022 doi: 10.3389/fgene.2022.719317

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