DNAdigest interviews the Head of ELIXIR’s Human Genomics and Translational Data
Serena Scollen is the Head of Human Genomics and Translational Data at ELIXIR. She is of the many great speakers at the BioData World Congress in Hinxton, UK that will take place next week (26-27 October 2016).
In her presentation during the 2nd day of the Congress, she will talk about maximising opportunities to use human genomics data and about how ELIXIR enables this through European collaborations.
Please introduce yourself, your background and your specific role in ELIXIR. Our audience is familiar with ELIXIR already – we interviewed Niklas Blomberg a year ago.
I joined the ELIXIR Hub recently as Head of Human Genomics and Translational Data (ELIXIR is the European infrastructure for bioinformatics and life-science data). Prior to joining ELIXIR, I was a Director within the Human Genetics and Computational Biomedicine group at Pfizer. In this role, I led and implemented a genetic and precision medicine strategy to support drug target selection and clinical programmes for the Pain and Sensory Disorders Research Unit. Earlier in my career, I worked within the Toxicogenomics group at GlaxoSmithKline. I gained postdoctoral experience at the University of Cambridge and Imperial College London and a PhD from the University of Cambridge, with a focus on the genetic susceptibility to disease. I have always been passionate about trying to advance understanding of the genetic predisposition of human disease mechanisms. Throughout my academic and industrial careers, I have had to drive innovative ways to access and generate data, working nationally and internationally, so I am very excited about applying these skills to develop a data infrastructure for maximizing discovery in this very impactful area of research.
You started in this new role a few months ago. What have you done so far and what are your future plans?
Within ELIXIR, one of the priority areas of focus is human data. Due to advances in technology this field of research is facing a shift in challenges away from data generation and towards data management. Europe has a plethora of data held within research institutes, cohorts, biobanks, pharmaceutical companies, health services and other resources, each with different assets. We need to implement a strategy to enable researchers from all sectors to find, manage, share and reuse human data whilst also preserving data privacy and respecting the national data privacy laws of the country of origin. ELIXIR aims to construct and operate a sustainable and long-term infrastructure for Human Genomics and Translational data in Europe. By doing this, it will allow data users to do what they do best – produce and analyse data. My role is to work with ELIXIR’s data resources, run by ELIXIR Nodes in our Member States, and external stakeholders to implement a comprehensive, ELIXIR-wide approach to the management, archiving and responsible sharing of human research data consented for reuse in scientific research. There are over 160 institutes that are affiliated with ELIXIR, many of which are actively working with sensitive human data. I am currently developing a portfolio of projects funded through ELIXIR’s budget and external grants with the aim of connecting European centres and facilitating responsible data sharing. As an example, several ongoing projects centre around the European Genome-phenome Archive (EGA) run by our nodes at EML-EBI and in Spain. In short, our goal is to bring the EGA closer to the user – be it in the form of better data discovery services (Beacons) or in the form of local storage facilities (local EGA). In addition, I am scoping European and global initiatives with a view to aligning ELIXIR’s portfolio of services for human research data with efforts such as the Global Alliance for Genomics and Health.
The plan is to have infrastructure in place to access, link and analyse data as well as enable interoperability, manage security and ensure sustainability. To do this effectively, we need to work together as a community within Europe and globally to link data (both genotypic and phenotypic) from multiple centres/cohorts/initiatives to achieve a scale that cannot be achieved by any one centre or cohort and in turn realise the potential and value of big data in human genomics. The impact of this will be seen through scientific discoveries and translation to medicine globally.
What, in your opinion, is most important in making ELIXIR a success? What are your personal challenges?
ELIXIR has a clearly defined five year Scientific Programme, which sets out the themes that are addressed in the first stages of its implementation. Having an overarching strategy for ELIXIR provides foundation for building projects and activities specific to human data.
ELIXIR now has 20 Members across Europe. Each Member hosts an ELIXIR Node that has a unique set of expertise and is made up of universities and research institutes from that country. Being able to draw on the experts in the fields and drive collaborations between centres is key to the overall success of ELIXIR. Creating a distributed structure that relies on the strengths of its Members ensures ELIXIR is greater than the sum of its parts. Collaborating and sharing data on a large scale is particularly key to human data – something that has transformed the field in the last decade and is set to continue to do so, if we have infrastructure in place to facilitate.
My personal challenge is to establish a portfolio of projects, using internal and external funding, that impact the field of human genomics and translational research across all sectors to enable international application. The human data and rare disease work being carried out within the ELIXIR-EXCELERATE project and through our early Implementation Studies gives us a strong platform to build on.
Do you (plan to) engage with the research community? Industrial partners? What, in your opinion, would motivate people to share research data?
It is absolutely essential to engage with the research community – the research institutes within the Nodes and the users of our services beyond. We work with industry through IMI projects such as OncoTrack and I am currently assessing several initiatives and consortia that are either driven by or have participating industrial partners. We also work closely with many domain-specific data initiatives such as RD-CONNECT. To reach users directly, we participate in many conferences, most recently at the ECCB 2016 in The Hague and very much want to hear from any researcher who is interested in ELIXIR and the work we do.
A vital consideration for any researcher handling human data is how to manage data protection. When storing or sharing sensitive and personally identifiable data we need to respect the consent agreements as well as the national data privacy law of the country these data come from. We need to establish infrastructure that allows data to stay in the country of origin and allows data to be shared with legitimate researchers and for specific and defined research. Robust regulations are required to increase trust in the people sharing data. Sharing data can often be cumbersome in time and resource to establish contracts and then infrastructure so the more we can provide to aid this process for the researcher, the more inclined researchers will be to share and researchers will have more time to do what they do best – research!
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