A central point of contact for ethics at EMBL
As EMBL’s 50th Anniversary year draws to a close, we wanted to highlight another milestone which should not be overlooked in this bumper year of celebration, as 2024 also marks ten years since the Bioethics Internal Advisory Committee (or BIAC) officially came into being.
While EMBL has always included a degree of ethical oversight in its research, the BIAC – created specifically to review and assess projects which propose to utilise human material or any data arising thereof – was transformational in its approach to ethics compliance. The BIAC was established to ensure that research on relevant materials conducted at EMBL appropriately consider relevant biosafety and bioethical issues, and to provide advice as needed to the Director General.
The committee is composed of a wide variety of experts from within and outside of EMBL, and it has grown from a handful of members in 2014, to over 30 in its current form. The BIAC must always include at least one member whose primary expertise lies in the biological and/or biomedical sciences, one member whose primary expertise lies in the Ethical, Legal, and Social Issues (ELSI) area, and one member who is not otherwise affiliated with the Laboratory.
In the spirit of the season, the Bioethics Services Team wanted to take the opportunity to showcase the BIAC past, present, and (possible!) future by catching up with Matthias Hentze (the first BIAC Chair), Jan Korbel (the current BIAC Chair), and Joanne Doleman (an external member who is also a current Sub-Committee Chair).
Recalling how he first became part of the BIAC, Matthias told us, “I was involved in the establishment of BIAC at EMBL (also related to being a Medical Doctor by training), the initial drafting of IP53 (the Internal Policy dictating the use of Human Biological Material), and I was also the first BIAC Chair.”
The new committee “needed a lot of groundwork and to create awareness” he said It was soon clear the consideration of the “ethical (and legal dimensions) could be improved,” and as a committee they “dug quite deeply into each application, with detailed discussion and follow-up. The volume was under 20 applications a year.” Matthias also highlighted that one of the biggest achievements of the BIAC “has been the definition and actual implementation of informed consent,” which impacts the kind of material that EMBL research can use.
When considering his time as BIAC Chair during the COVID years, Jan praised the “entirely voluntary membership that worked tirelessly around the clock” to scrutinise not only business-as-usual applications that use human samples and data – which had grown to nearly 50 applications per year at that point – but also additional projects with a COVID-specific focus.
“I still vividly recall how Halldor Stefansson and I reviewed 20 applications for EMBL research about COVID – literally overnight – to allow the site to react to the pandemic,’ he said. “Back then, we needed to radically adapt our processes and ways of working, and this is how the Bioethics Services function as we have it now was born.”
Jan, who is also Scientific Co-Chair of EMBL’s Bioethics Services with Alexander Aulehla, said that ethics got “so entirely embedded in the EMBL culture that it deserved a dedicated team to deliver it effectively.” The Bioethics Services team, which acts as gatekeeper for research ethics issues at EMBL, also includes animal, environmental, and technological ethics.
But what of the future of EMBL’s BIAC, and what issues will they be discussing in 2034? The answer “seems easy,” Matthias said. “Probably a fair amount will revolve around responsible data use in an age when AI has developed much further. Additionally, another set of questions may arise from increased possibilities to manipulate human life at will – intended as enhancements or improvements – but likely with profound ethical implications.”
Joanne Doleman, Associate Head of Research Governance at the Wellcome Sanger Institute and one of BIAC’s external Sub-Committee Chairs, agreed with this vision of the future. “The application of individual genetics to personalised therapeutics will be an interesting area of development, and the application of AI or machine learning to analyse data and research results will be commonplace by then, I am sure!” she said.
When asked what benefits she brings to the BIAC as an external member, Joanne said that “my input to the BIAC has always focussed on the human materials and donor consent as that is my area of expertise.” This arm’s-length approach has also allowed her to reflect on the benefits the BIAC now brings to the EMBL community. “I’ve enjoyed being party to continual improvement processes within BIAC,” she said. “The new portal and efficiencies of review and application must have certainly benefitted researchers, allowing transparency of information-sharing between the BIAC and EMBL.”
The BIAC’s successful input would simply not have been possible without the hard work and dedication of its subcommittee chairs (currently Halldor Stefansson, Joanne Doleman, Thomas Keane, and Michael Zimmermann) and the numerous members who all work together with a collective aim of facilitating ethically driven research at EMBL.
Jan conveyed his appreciation as well. “Thanks to all members of the EMBL family and the numerous collaborators who have supported BIAC so effectively over the years, ensuring that EMBL scientists can partake in research with human samples in a responsible and ethical way.”
And from the Bioethics Services team, we say ‘thank you’ as well. Here’s to the next decade of the BIAC.
Lucia Schmitz (née von Bredow), Ethics Lead, is part of Bioethics Services that provides the Secretariat for the BIAC and the EEB (EMBL Ethics Board).