The second meeting of the City-Labs Talk Series took place on September 19th, 2018. The event, entitled “Biobanking: indispensable tool or ethical concern?”, was organised by the City-Labs team to discuss to what extent public health could benefit from biobanking. Key future ethical and technical challenges were also discussed.
Biobanks collect and store biological materials (e.g. blood, tissue or DNA) and related data for use in research. The data is considered as essential raw materials for the advancement of biotechnology, life science, drug development and basic human health. However, biobanks bring about important questions on privacy, research and medical ethics.
As pointed out in the first remarks by Anna Pia Papageorgiou (European Commission) the EU institutions and its member states are already looking at how to strengthen collaboration on data sharing (e.g. EU Declaration on genomics) and foster knowledge in biosample management. In particular, she outlined a few of the initiatives that the Commission is taking around biobanking and to support the scientific community’s efforts towards biotech advancement. First, the long-term goals of the European Human Biomonitoring Platform (HBM) in which the Commission plans to assess the exposure of chemical impacts on human cells and any causal relationship between the chemicals and environmental aspects and disease or other health issues. Secondly, the creation of an HCA (Human Cell Atlas) where the goal is to develop a classification for every cell of the human body. Once completed both the HBM and HCA will provide a better understanding of the human body and how medicines and new technologies can better tackle diseases and chronic conditions.
The ethical and regulatory framework as well as the impact of the General Data Protection Regulation (GDPR) was discussed by the participants. As highlighted by Ms Papageorgiou, GDPR applies to the protection of patients’ privacy, a conditio sine qua non for expanding biobanks’ database and securely fostering data sharing. However, some clarity is needed over ownership of the genetic materials as well as common guidelines on the ethical purposes of the research. Another concern of biobanks is that often data are concentrated in the hands of a few private businesses, which is why better collaboration amongst biobanks and research centres is essential.
During the debate, Francesco Florinidi (Biobanking and Biomolecular resource Research Infrastructure BBMRI-ERIC) stressed the importance of cooperation to improve the standardisation of studies using biobanks. In the past, 78% of study results using biobank materials were not reproduced to a satisfactory level which in turn meant the results are difficult to aggregate. By improving the quality of the sample through creating and enforcing standards, future research will become more efficient and lead to more innovation. He also presented the objectives and the works of BBMRI-ERIC, a European research infrastructure for biobanking, which brings together all the main players from the biobanking field (i.e. researchers, biobankers, industry, and patients) to boost biomedical research. Ultimately, BBMRI-ERIC connects several biobanks in various countries so that researchers have access to a diverse variety of samples ranging in type and origin of material. The research infrastructure sets the ethical guidelines and ensures that those who are utilizing the materials and data are following the necessary procedures.
The discussion was enriched by the contribution of Mr Laurent Dollé (Biobanks Wallonia-Brussels) who illustrated the practices within the biobanking process necessary to make the results statistically significant and reproducible. However, with biomaterial and data sharing among different biobanks, it is essential that common guidelines are followed to make data heterogeneous and reliable. Mr Dollé also spoke about how GDPR legislation has affected the operations within biobanks, for instance by increasing expectations of patient outreach is the major change for researchers. It also remains difficult to get consent and share data among members of biobanks and researchers to determine how the engagement should occur and to what extent information should be shared with the patient.
Despite the potentials of biobanks in fostering research and scientific advances, biobanks are financially unstable because it is difficult for them to ensure the right amount of funding. Funding represents a key barrier for biobank facilities which are unable to charge all researchers for the use of biobanking materials. The boards of each biobank must then find other sources of funding.
On this note, Mr Laurent Dollé stressed that biobanking directors must create innovative business plans for ensuring a sustainable development.
Over the course of the discussion, participants identified three pillars supporting biobanking sector. The first pillar concerns patient and citizen care in which the goal is developing technologies and medicines that focus on how the biobanks are changing healthcare by allowing scientists to tailor the medicines. Secondly, healthcare professionals can increase quality of care offered with new medical technologies leading to more efficient diagnosis and treatment of disease. The third pillar includes medical researchers and scientists, essential for transforming data into findings.
If used correctly, biobanks’ data can be indispensable tools for the advancement of public health, provided that the objectives of biobank-based research are consistently defined for citizens and those who represent their interests. This group of stakeholders must be involved by policymakers in shaping future guidelines as well as implementing GDPR in biobanking sector.
Please click here to see the pictures of the event.
City-Labs is a project financed by the European Regional Development Fund (ERDF) which aims to integrating the innovation of laboratory medicine and mobile health. The scope of the project is to facilitate access to laboratory tests as part of a collaborative approach to ambulatory care of a chronically ill individual, as well as to contribute to the dynamic monitoring of patients with chronic diseases.