BBMRI-ERIC ACADEMY

Biobank Advancement in Egypt – Medical Ethical Evolution

Author: Amany Maher (MASRI)

Egypt has made significant strides in establishing and developing biobanks, driven by collaborative efforts between government institutions, research organisations, and healthcare facilities. The Egyptian government has recognized the importance of biobanking and has provided support for infrastructure and regulatory frameworks, leading to the creation of several biobanks across the country. These advancements in biobanking have had a substantial impact on medical research and the development of personalised healthcare solutions in Egypt. The establishment of the Egyptian Genome project, in collaboration with the Academy of Scientific Research and Technology, aims to position Egypt at the forefront of personalised medicine and gene therapy. However, the growth of biobanks has also raised important ethical considerations that must be addressed.

Egypt's regulatory framework, including the Clinical Research Law and Data Protection Law, plays a pivotal role in ensuring compliance and protecting patients and research participants. Ethical principles, such as informed consent, confidentiality, and data security, are central to the operation of Egyptian biobanks. To further strengthen biobanking practices, Egypt has established the Egyptian Biobank Alliance (EBA), a joint network among national biobanks, which aims to create a research platform for new medicines. The benefits of such biobank networks include increased sample size and diversity, harmonisation of activities, and improved efficiency and cost-effectiveness. Looking ahead, the future of biobanking in Egypt holds promise for continued advancements in medical research, personalized healthcare, and ethical practices. Through collaborative efforts and adherence to ethical principles, Egypt has positioned itself as a key player in the global biobanking community, contributing to the betterment of healthcare and scientific knowledge.

“Previously this month, I attended a marvellous workshop organised between BBMRI and IARC.  I had a great time meeting colleagues from Europe learning about different aspects in ELSI and to hear about their efforts in Biobank science.

"I was happy to present & highlight the progress of Egyptian Biobanks and share the news of construction of Egyptian biobanks alliance.” 

Amany Maher (MASRI) - Keynote Speaker 

“All the Data from Everywhere all at Once”: Visions and Practicalities in Data Integration 

Author: Klaus Høyer (University of Copenhagen)  

On March 30th, The Economist had a special issue on data and artificial intelligence (AI) in healthcare. It was not the first, and will probably not be the last. When outlining what it takes to realise the proclaimed potential of AI, the issue featured a familiar trope, namely the dream of having “All the data from everywhere all at once” (p. 10). The particular formulation has an uncanny resemblance to the award-winning movie ‘Everything Everywhere All at Once’ (2022) about a pressured woman feeling forced to tackle everything everywhere all at once, and who is sucked into an ontological multiplicity where what happens in one world has life and death implications in other worlds, and where powerful forces struggle for ultimate control. In this talk, I will use the trope of having all data available in total compression of time and distance.

I will suggest that it too comes about as a result of powerful forces, and that it can indeed lead to a form of ontological multiplicity, albeit of a very different nature from that suggested in the movie. Drawing on my recent book (Data Paradoxes.

The Politics of Intensified Data Sourcing in Contemporary Healthcare, MIT Press 2023), I describe the impact and effect of data integration initiatives over the past decades in Denmark and relate these experiences to current cross-border data initiatives. My key message will be that we may need to put limits to certain forms of integration to make others work according to purpose.  

“This meeting furthermore showed the value of these exchanges for both developing ELSI scholarship and for ensuring social robustness of contemporary biobanking.”

Klaus Hoyer (University of Kopenhagen) - Keynote Speaker

How Has Oncology Practice Changed Over the Pandemic?

Author: Brenda Boegard (University of Lausanne)

This presentation will elaborate how oncology care and research was adapted during the COVID-19 pandemic in the Metropole of Lyon (France), including the lasting innovations that came out of the crisis. The research method involved 22 semi-structured qualitative interviews of healthcare professionals, managers, and researchers in the Lyon, France region coming from both public and private academic hospitals. The interviews took place from February 2021-December 2022 in order to assess the long-term adaptations and innovations in cancer care organisation in the post-COVID era, as cancer care was severely affected during the pandemic.

The main results show adaptations and innovations in 1) new processes and resources to facilitate disciplinary and interdisciplinary work; 2) harmonisation and streamlining of patient journeys. Our analysis utilised the capabilities approach, an interdisciplinary social sciences approach that focuses on the capabilities of persons to be and to do, to elaborate the conditions by which local actors were able to be agile, to adapt and to innovate in spite of the healthcare emergency and in coherence with their professional and personal values.

Envisioning the European Health Data Space: Implications upon the Reshaping of Biobanking Infrastructure

Author: Anders Korsgaard (National and Kapodistrian University of Athens) 

The European Health Data Space (EHDS) is envisioned to establish a common framework for data sharing, aiming at capitalising on the imagined potential of a safe and secure cross-border exchange, use and re-use of health data. Visions for better health and biomedical research in Europe thus become key arguments in favour of sharing health data. Within this framework, biobanks and biobanking networks, like the BBMRI-ERIC, are endorsed as key infrastructures with expectations to generate value through biomedical research, made possible by the creation, storing, and sharing of samples and data. However, reshaping biobanking to fit under the EHDS could be translated into tension with old practices and arrangements.

Being attentive to visions in data practices and research infrastructures means to explore how they lead to sociotechnical rearrangements.

Pooling of health data for research in many ways rests on the infrastructuring of biobanks, i.e. building enabling environments for quality data sharing. It therefore becomes important to look at how the EHDS affects the infrastructure of biobanks (and BBMRI-ERIC). Looking into infrastructuring means bringing the practices of a set of actors – ranging from researchers, up to policy makers - into one socio-technical network. The paper will present interview data from actors connected with the research infrastructure of BBMRI-ERIC in Greece and Norway, focusing on the uses of visions specifically in the discussions surrounding biobanking, while providing preliminary findings regarding the ways the EHDS visions are being contested and/or stabilized and how the actors themselves envision health data sharing going forward. 

Ethical Implications of Different Healthcare Systems for Transatlantic Data Exchange between the US and the EU

Author: Anna Sierawska (Technical University of Munich)

Transatlantic data sharing has a potential to significantly advance healthcare in the EU and the US, and globally. The strict data protection regulations (GDPR) in the EU have been identified as primary barrier hindering of sharing patient data between EU and US. The sluggish progress in data sharing partnerships is unethical as it impedes the development of better-informed therapies and treatments for patients on both continents. However, one aspect that is missing in this discussion is the significant difference in healthcare systems between those two countries, particularly concerning their private and public financing regulations, and overall access to healthcare.

While the European approach emphasises social solidarity and recognises healthcare as a fundamental right, the US one the other hand tends to favor individualistic and private insurance-based healthcare model. The principle of solidarity plays a key role in the sharing of patient data, as it is only by recognising collective, solidarity-based action the individual person can benefit. Public healthcare in the EU is an example of a solidarity-based approach that does not exist to the same extent in the US. The question arises as to how this solidarity-based incompatibility could be reflected in the sharing of patient data, which is based on similar solidarity-based concepts. The main focus of this project is to compare the EU and US healthcare systems and their impact on the type and quality on patients’ data sharing.