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Health-related findings: what should biobanks offer participants like you?

Imagine you've donated a small sample of your blood or saliva and allowed access to your health data to a biobank, hoping to contribute to medical research that could benefit countless others. Months or even years pass, and significant discoveries have been made using your samples. Some of these findings might be expected, while others could be unexpected, and they may directly impact your health. Would you want to know about these discoveries? Or would it be better to trust researchers to focus on advancing science independently without sharing potentially surprising findings with you?

Biobanks store vast amounts of biological samples and health data for current and future research, advancing medical science in unique ways. However, there is a grey area when it comes to returning individual health-related findings to participants. A recent survey of ethics experts conducted by the irecs project reveals that many experts struggle with this issue.

Research Ethics around the world – how does it compare to the practices in the EU? 

How do research ethics committees work in other parts of the world? What works well, what are the challenges such committees face and how are they different from the ethics committees in the EU?

To find out more, we spoke to experts on the work of research ethics committees outside the EU. We also looked at the results of a public survey and two case studies (one from Africa and one from China) to broaden the EU focus of the irecs project and get a more global perspective. 

call for abstracts: session on research ethics at the sts conference in graz, 5-7 may 2025

We are pleased to share that the call for abstracts for the session "Navigating the Challenges of Research Ethics in the Age of Emerging Technologies" at the upcoming STS Conference in Graz, Critical Issues in Science, Technology and Society Studies, held from 5–7 May 2025 is now open.

Call for Submission:
Special Issue on Strengthening Ethical Oversight of Emerging Technologies 

As part of its mission, irecs is collaborating with NanoEthics, a leading journal focusing on studies of new and emerging technologies, to announce a Call for Papers (CfP) for a special issue titled “Strengthening Ethical Oversight of Emerging Technologies”. This initiative seeks to explore how research ethics and integrity measures can help meet the challenges posed by new technologies and promote responsible science. 

Joining forces for ethical research — the irecs Research Ethics Cluster

irecs has launched a significant initiative to foster collaboration and knowledge sharing within the research ethics community: the irecs Research Ethics Cluster. This cluster brings together representatives from irecs and other relevant projects and networks to discuss findings, share experiences, and collectively address ethical challenges in research. 

irecs at the 8th world conference for research integrity2024

To present the irecs project and exchange innovative solutions with other projects, partners and networks, part of the irecs team presented the project at the 8^th World Conference for Research Integrity (WCRI) in Athens, Greece, on 2-5 June 2024.

Adapting sustainable training materials on research ethics for ethics experts and researchers on a global scale

irecs consortium members meeting 2024

In order to summarise the first half of the irecs project and plan for its forthcoming stages, the irecs team met at the University of Vilnius on 6-7 May 2024 for the irecs consortium meeting. The consortium meeting serves as a pivotal platform for the dissemination of irecs’ training materials through existing research ethics and integrity platforms, while sharing and reflecting on the project’s progress so far.

Research ethics and social justice: What are the challenges?

In a context of rapid technoscientific advancements and emergent research responses to new global dynamics and challenges, the field of research ethics needs to broaden its scope. Necessary issues to be included are environmental issues, new technologies, animal issues and social justice. Social justice can be defined as a guiding principle for achieving a just society. To achieve social justice, we need to understand current inequalities. As such, historical processes of oppression and domination need to be taken into account. 

Genome editing: legal challenges

Legal consideration of new technologies always faces the challenge that the law can only react with a time lag. When scientists work on new methods and processes, politicians must first become aware of this work and then conclude that there is a need for legal action. As a rule, it is then examined whether the existing laws are sufficient to regulate the new technology in question, the existing law needs to be amended or a completely new framework needs to be developed. The relevant processes are therefore politically driven, predetermined by certain procedural rules and complicated by the fact that the relevant laws must strike a fair balance between the rights and interests of a wide range of stakeholders. All of this means that legislative procedures at national and European level regularly take years and sometimes even decades.

Health and healthcare in the AI Act 

Health and healthcare are central to the recent AI Act adopted by the European Union. In this legislation, the classification of the various uses or applications of AI is based on the levels of associated risks in terms of health, safety and fundamental rights. The irecs team, having worked on the ethical issues of AI in health and healthcare, is delighted to see that a number of its conclusions and recommendations coincide with many key aspects of this new legislation: concerning individual health, public health, healthcare systems and biomedical research.

How the EU AI Act could guide the ethics of AI research 

In the blink of an eye, artificial intelligence has gone from theoretical posturing to tools embedded into software, search engines and even healthcare systems millions use each day. Yet approaches to addressing ethical aspects of AI in research are in their infancy. AI technologies pose unforeseen and unique ethical challenges that are not yet reflected in many ethics review processes for research. 

Adapting institutional research ethics and integrity governance to challenges of new and emerging technologies

irecs at the ENRIO Conference 2023

New and emerging technologies not only permeate society but also raise challenges for research ethics and integrity. Especially recent advances in artificial intelligence, such as ChatGPT, but also progress in, for example, extended reality, genome editing and biobanking research create a need for governance schemes that help ensure research on and with such technologies is conducted responsibly. The irecs project develops and pilot-tests an institutional governance model that combines guidance and educational elements.

Biobanking ethics and governance in China

Current practice and future perspectives

In the past 20 years, with the development of precision medicine, biobanking in China has witnessed rapid development. Biobanks are resources of human biological material and genetic information that are used for research on human health and disease.

Today, a comprehensive Chinese biobank network exists, composed of biobanks in major hospitals, research institutions and universities, third-party storage platforms run by commercial companies, and the Biobank Alliance and the National Biobank Network as the effective support for administration and regulation. The establishment of the biobank network lays a solid foundation for the development of life sciences in China.

However, considering that the demand for biobanking is expected to increase in China, there is still a lot of infrastructure that needs to be built. 

MILLION DOLLAR VIALS

The greatest ethical challenge to genome editing research isn't designer babies, but economics.

Year on year, the records for the most expensive medications in the world are being broken by a new frontier in medicine — gene therapy.

It sounds like the stuff of the future: gels that deliver packages of genes into cells, one off-shots that grant years of life to patients and IV drips altering the material within our cells. Chronic, debilitating genetic diseases could be made manageable with a single vial of a gene therapy treatment. Yet, most of these treatments cost upwards of a million dollars a dose.

Now, a wave of therapies is in the pipeline. CRISPR-Cas9 technology makes gene editing easier and more efficient than ever, but what is quickly becoming the most pressing issue is patient access.

University leaders embrace and tackle change

The European University Association hosted a productive leadership roundtable on research ethics, integrity, and the rapid pace of new technology

On 31 May, 26 rectors and vice-rectors from 18 European countries met online for a leadership roundtable on institutional approaches to research ethics and integrity. The meeting was hosted by the European University Association in the context of the iRECS project to gather the views of university leaders about the current challenges that they experience.

PHILOSOPHY OF EXTENDED REALITY AT THE COLLÈGE DE FRANCE

The conference coincided with the launch of Apple’s new VR headset, and the question of its implications

The iRECS team was at the Collège de France, in the heart of the Latin Quarter in Paris, to attend a two days international conference on the philosophical analysis of Extended Reality (XR) technologies. This conference, entitled Virtual and augmented realities: epistemological and metaphysical issues, was organized by Professor Claudine Tiercelin, who holds the Chair of Metaphysics and Philosophy of Knowledge at this historic Parisian academic institution, and Assistant Professor Alexandre Declos.