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Raeka Aiyar

EMBL, Germany

Raeka Aiyar works as a scientific communications officer at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany. She is a experienced scientific communications professional and molecular biologist, passionate about engaging diverse audiences in discussions on the impact of biomedical research, dedicated to improving the dissemination and communication of science

Meet Raeka Aiyar
21/11 At the Ethics Cafe

Professor Stephen Birch

Professor in The Centre for Health Economics and Policy Analysis at McMaster University, Canada
Chair in Health Economics at the University of Manchester
Adjunct Professor at the University of Technology Sydney, Australia

Stephen Birch is a Professor in The Centre for Health Economics and Policy Analysis at McMaster University in Canada, Chair in Health Economics at the University of Manchester, and Adjunct Professor at the University of Technology Sydney, Australia. He is senior scientist at the WHO Collaborating Centre on Health Workforce Planning at Dalhousie University, Canada and a former member of the UK Department of Health's Centre for Workforce Intelligence. 

He has served as a consultant with WHO and the World Bank as well as many national and provincial health departments on health workforce planning.  He was a consultant to the Barer-Stoddart report on physician planning in Canada, The Kilshaw report on Physician payment reform in Canada and the George Committee on the future of the physican workforce in Ontario. He led research in Canada on the development and application of needs-based models of health care funding and has further developed these models for application to health workforce planning.

His main research interests are in the economics of health care systems and methods for the evaluation of health care interventions with particular emphasis on equity, resource allocation, alternative delivery models and sustainability.  He has over 200 publications in peer reviewed journals and was ranked equal first in Canada and equal 35th in the world in the 2012 World Bank publication on the quantity and impact of health economics research.  He was Senior Editor for Social Science and Medicine from 1997-2012 and has served on various public boards including the Local Health Integration Network and the District Health Council in Hamilton, Ontario, the Health Professions Regulatory Council of Ontario and the Community Health Council for York District Health Authority.

Meet Stephen Birch
at the keynote on Biobanks and Health Economy, Friday 22 November

Dr. Annelien Bredenoord

University Medical Center Utrecht, assistant professor of Biomedical Ethics

Annelien L. Bredenoord  PhD is an assistant professor of Biomedical Ethics at the University Medical Center Utrecht, The Netherlands. Previously, she studied theology and political science at Leiden University and obtained her PhD at Maastricht University. Her research, consultancy and teaching is focused on the ethical issues raised by the rapid developments in regenerative medicine, stem cell research, genetics/genomics, biobanking and novel reproductive technology. She published widely in this field and is member of several (inter)national committees among which the Ethics Working Party of the International Stem Cell Forum, the Young Health Council of the Netherlands, the Dutch National Indication Committee Preimplantation Genetic Diagnosis and UMC Utrecht's Research Ethics Committee.

Meet Annelien Bredenoord
22/11 at the Ethics cafe
22/11 at the Closing debate: Privacy vs. Progress

Professor Anthony J. Brookes

University of Leicester, UK

Professor Brookes is, among other things, Professor of Genetics and Director of the ‘NUCLEUS' Genomics Services Facility in the University of Leicester and Co-ordinator of the EU GEN2PHEN Pproject. At the laboratory at Leicester University, he is involved in several projects aiming to:

  • innovate and improve methods for the experimental study of DNA variation in relation to common disease, and
  • devise next-generation approaches towards web-based data management of complex information emerging from the global study of DNA variation in disease contexts.

Meet Anthony J. Brookes
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE
22/11 At Closing debate: Privacy vs. Progress

Andy Brooks

Associate Professor Environmental & Occupational Health Sciences Institute (EOHSI)
Chief Operating Officer, Rutgers University Cell and DNA Repository (RUCDR)
Director, Bionomics Research and Technology Center (BRTC)
Environmental and Occupational Health Sciences Institute
Rutgers University, Department of Genetics
Robert Wood Johnson Medical School

Dr. Brooks is a molecular neuroscientist whose research focuses on deciphering the molecular mechanisms that underlie memory and learning. These studies investigate gene-environment interactions in the context of aging, neurodegenerative disease and neurotoxicant exposure. Dr. Brooks is a well-recognized genomicist and has been involved in the development and implementation of cutting edge molecular based technologies for nucleic acid and protein analyses. He has worked to automate the RUCDR and build the service entity that provides high throughput sample management and analysis for DNA, RNA and protein-based technologies to hundreds of labs globally.

Meet Andy Brooks:
21/11 and 22/11 At Idea Lab 1 Best practices for multi-omics biomarker discoveries

Professor Paul Burton

University of Leicester

Professor Paul Burton is a genetic epidemiologist with a research program that currently focuses on the design, harmonization, analysis and meta-analysis of large-scale biobanks and on access to, and use of, the data they generate.

He chairs the International Steering Committee of the Public Population Project in Genomics (P3G) and the Access Committee for three CLS National Birth Cohorts, including the 1958BC which is one of the UKs leading providers of data and biosamples for large scale genetic epidemiology. He is Science Co-coordinator of BioSHaRE-EU  (FP7, Large Scale Integrating Project) which is led by Professor Ronald Stolk, Groningen.  He is a member of the International Scientific Advisory Board of UK Biobank, the International Oversight Committee of the Canadian Longitudinal Study of Ageing, and of the Data Access Committee of the ESRC funded Understanding Society.

Meet Paul Burton :
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Professor Ellen Clayton

Craig-Weaver Professor of Pediatrics
Professor of Law
Vanderbilt Law School (Nashville, USA)

Ellen Wright Clayton is an internationally respected leader in the field of law and genetics who holds appointments in both the law and medical schools at Vanderbilt Law School, Nashville, where she also co-founded the Center for Biomedical Ethics and Society. She has published two books and more than 100 scholarly articles and chapters in medical journals, interdisciplinary journals and law journals on the intersection of law, medicine and public health. In addition, she has collaborated with faculty and students throughout Vanderbilt and in many institutions around the country and the world on interdisciplinary research projects, and helped to develop policy statements for numerous national and international organizations. An active participant in policy debates, she has advised the National Institutes of Health as well as other federal and international bodies on an array of topics ranging from children's health to the ethical conduct of research involving human subjects. Professor Clayton has worked on a number of projects for the Institute of Medicine, of which she is co-chair and a member of its National Advisory Council, and is currently vice-chair of a committee evaluating commercial sex exploitation in the United States. She also coordinated the Consent and Community Consultation working group of a five-institution consortium exploring the use of electronic medical records for genome-wide association studies. She is an elected Fellow of the American Academy for the Advancement of Science.

Meet Ellen Clayton
22/11 At the Ethics Cafe

Dr Jim Dowling

Associate Professor at KTH - Royal Institute of Technology, Sweden
Senior researcher at SICS - Swedish Institute of Computer Science

Dr. Jim Dowling is an Associate Professor at KTH – Royal Institute of Technology, and a senior researcher at SICS.
His research background is distributed systems, and he previously worked at MySQL AB. He is coordinator of the BiobankCloud FP7 project that is providing support for the storage and analysis of
big genomic data.

Meet Jim Dowling
21/11 and 22/11 At Idea Lab 2 Standardizing the Changing World

Vincent Ferretti

Ontario Institute for Cancer Research

Dr. Vincent Ferretti's expertise is in bioinformatics with experience in both large-scale software development and computational genomics.

As Associate Director, Bioinformatics Software Development, Dr. Ferretti is heading the software infrastructure development of the International Cancer Genome Consortium (ICGC) Data Coordination Center, which is responsible for building the consortium‘s databases and public data web portal. Dr. Ferretti is also leading the development of an OICR bioinformatics infrastructure for personalized cancer medicine in collaboration with the University Health Network-Princess Margaret Cancer Centre in Toronto. Dr. Ferretti also conducts an independent research program with the objective of developing innovative genome-wide bioinformatics tools to identify new viruses as causative agents in human cancer. His laboratory is developing the CaPSID platform allowing the identification of viral sequences in tumour genomes and transcriptomes generated by next generation sequencing technologies.

Dr. Ferretti is contributing to several research projects in genomic epidemiology. He is Co-Principal Investigator of the Maelstrom Research program. It is within this context that he currently leads an independent software development program, called OBiBa (, which aims to provide the international biobanking community with a free and high-quality open source biobank information management system. OBiBa software is used by several biobanks and has been selected as the main IT platform of the EU-FP7 funded project BioSHaRE-EU, which has a mission to standardize and harmonize data from some of the largest biobanks in Europe.

Meet Vincent Ferretti:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Filippo Franchini

A.I.S.EA (Italian Alternating Hemiplegia of Childhood Association)

Born in Varese (Italy) in 1961. Graduated in Computing Science at the University of Milan in 1989. Working as free-lance IT consultant, collaborating with Italian and international companies as project manager and sw analyst/developer. Focused mainly on client/server and web applications based on RDBMS for data storage/mining.

Member of A.I.S.EA (Italian Alternating Hemiplegia of Childhood Association); since 2004 Project Manager of I.B.AHC – BioBank And Clinical Registry On Alternating Hemiplegia of Childhood.

Member of A.I.S.EA Board of Advisors since april 2011; member of A.H.C.F.E. (Alternating Hemiplegia of Childhood Federation of Europe) Board since January 2013. 

Meet Filippo Franchini:
21/11 and 22/11 At Idea Lab 3 Patient input in biobank and patient registries

Professor Uta Francke

Professor of Genetics and of Pediatrics, Emeritus, Stanford School of Medicine
Senior Medical Director, 23andMe Inc.

Uta Francke is professor emeritus on recall of Genetics and Pediatrics at Stanford University where she teaches medical and molecular genetics and clinical genetics. She was appointed Senior Medical Director at 23andMe in 2010, after serving as an Editorial Advisor. Professor Francke's past research has ranged from human and mouse chromosome identification and gene mapping to the discovery of genes involved in heritable disorders, studies of their functions and of disease-causing mechanisms. Applying genomic technologies to mammalian genetics research, her most recent focus has been on the development of mouse models for human microdeletion syndromes. At 23andMe, she is involved in studies of common diseases and traits, and of consumer reactions to receiving genetic information. Dr. Francke is board-certified by the American Board of Pediatrics and the American Board of Medical Genetics in Clinical and Molecular Genetics and Cytogenetics. She has been an Investigator of the Howard Hughes Medical Institute and the recipient of the Antoine Marfan Award from the National Marfan Foundation, the Colonel Harland Sanders Lifetime Achievement Award in Genetics from the March of Dimes Birth Defects Foundation and the Allen Award from the American Society for Human Genetics. She has been elected to memberships in the Institute of Medicine of the National Academies, the American Association for Advancement of Science and  the American Academy of Arts and Sciences. She is a past president of the American Society for Human Genetics and of the International Federation of Human Genetics Societies and a founding member of the American College of Medical Genetics. Professor Francke holds an MD (Dr. med.) from the University of Munich, Germany.

Meet Uta Francke
21/11 at the keynote lecture on Biobanks: ethics & trust (future issues):"SNPs and surveys: Participant-driven research with self-reported data".


Professor Henk-Jan Guchelaar

LUMC, Clinical Pharmacy and Toxicology
University of Leiden

Professor Henk-Jan Guchelaar is eminently suited to deliver a keynote on biobanks and personalized medicine. He is program leader of the research program "Heterogeneity of drug efficacy and toxicity in relation to individual pharmacokinetics, pharmacodynamics and pharmacogenetics" at the Leiden UMC, where he is Chair of the department Clinical Pharmacy & Toxicology. He also holds the post of Director of The Leiden Center for Translational Drug Discovery and Development (LCTD). His other appointments include Professor of Clinical Pharmacy at the Leiden-Amsterdam Center of Drug Research, Faculty of Science, University of Leiden, and at the School of Medicine, University of Leiden.

Meet Henk-Jan Guchelaar
22/11 At the keynote on Biobanks, drug development & clinical practice (future issues): "Personalized medicine: where are we, really?"

Vincent Gulmans


Research Coordinator at Dutch Cystic Fibrosis Foundation.
Coordinator Dutch CF Registry
Member Executive Committee European CF Registry
Project leader "Accredtitation of Quality of Care from patients perspective in Cystic Fibrosis"
Chair Working Group Patient Participation in Research at Association of Healtcare Charities "Samenwerkende GezondheidsFondsen (SGF)"

Meet Vincent Gulmans:
21/11 At Idea Lab 3 Patient input in biobank and patient registries

Dr. Robert Hewitt

Executive officer, ESBB

Dr. Robert Hewitt is Executive Officer of the European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB). Dr. Hewitt received a BSc (Hons) in Immunology and Microbiology from the University of London in 1980, a medical degree (MBBS) from the University of London in 1983, and a PhD in virology from the University of Glasgow in 1988. He worked in the Department of Histopathology, Queen's Medical Centre, Nottingham from 1988-1994, studied in the Laboratory of Pathology at the National Cancer Institute, Bethesda, MD, USA from 1994-1998, then moved back to London (1998-2000) Hammersmith Hospital Imperial College School of Medicine, where he worked with Gordon Stamp and El-Nasir Lalani to establish the Human Biomaterials Resource Centre (HBRC), a biobank with collaborative links to various pharmaceutical and biotechnology companies. He followed that with a year's stay to establish a new biobank at the King Faisal Specialist Hospital, Riiyadh, Saudi Arabia.

Dr. Hewitt moved to Singapore, where from 2002 to 2009 he was a Senior Scientist and established a new tissue repository that became a leading participant in the Singapore Tissue Network (STN). Dr. Hewitt also established a closely linked hospital-based cancer registry running on North American guidelines (NAACCR) and obtained multiple grants from the Singapore Cancer Syndicate (SCS). He established collaborations with a number of biotechnology companies and hosted the 2007 ISBER (the International Society for Biological and Environmental Repositories) annual meeting in Singapore, which was the first meeting of the Society in Asia. Dr. Hewitt was elected ISBER President for 2008-2009. He was the first non-US ISBER president. During his year as President he created several new committees, promoted creation of the Asian affiliation and ensured that ISBER join the Forum for International Biobanking Organizations (FIBO), which he co-founded.

He is the European Editor of Biopreservation and Biobanking (ISBER Official Journal) and serves on several ISBER committees. Last but not least, during the last 2 years he has formed the European, Middle-Eastern and African Society for Biopreservation and Biobanking (ESBB), of which he is serving as the Executive Officer and which has become an official Chapter of ISBER.
In 2012, he received the International Society for Biological and Environmental Repositories (ISBER) Outstanding Achievement in Biobanking Award.

Meet Robert Hewitt:
22/11 At Educational session Publishing

Peter-Bram 't Hoen


Peter Bram ‘t Hoen is working as assistant professor for the Center for Human and Clinical Genetics (LUMC), and is responsible for all bioinformatics activities in the Department of Human Genetics. He is the direct supervisor of 3 post-doctoral researchers, 4 Ph.D. students, 2 scientific programmers, and 3 technicians.

Over the past few years, he has been at the forefront of the development and application of new high-throughput techniques such as microarrays, high-throughput sequencing and mass spectrometry-based proteomics. Although he was trained as a molecular biologist, he acquired bioinformatics and programming skills and has become proficient in data analysis, data integration and statistics over the past few years. His main incentive is to make optimal use of available data to improve  understanding of biology in general and muscle biology in particular, and to translate this into clinically relevant applications. Biosemantics methods are the core technology used for data interpretation and data integration. He leads a multidisciplinary team of researchers (bioinformaticians, biostatisticians, molecular biologists, biochemists). They focus on the regulation of gene expression, miRNA biology, (cross-species) integration of –omics data, analysis of biological networks, antisense and RNAi technology, statistical methods for next generation sequencing data analysis, protein biomarker discovery.

Meet Peter-Bram ‘t Hoen:
21/11 and 22/11 At Idea Lab 1 Best practices for multi-omics biomarker discoveries

Peter Kapitein

Alpe d'Huzes
Sage Bionetworks

Peter is President and Patient Advocate at Inspire2Live, the international organization for the victory over cancer. He is also the ambassador for the Alpe d´HuZes fund raising effort for cancer treatment and research. He's currently advocating the slogan ‘Save my tumour – it might save your life'.

Since 2005 Peter lives with cancer and shows other people that cancer is not always a death penalty but also it can be the start of a new and richer life full of chances and beautiful people.

The coming years Inspire2Live will take the next steps by setting up up more than 20 PR and awareness-enhancing events across the world and raising more than EUR 250 million per year, if not more.

Meet Peter Kapitein:
21/11 At Idea Lab 3 Patient input in biobank and patient registries 

Dr. Gabi Kastenmüller

HelmholtzZentrum München, Institute of Bioinformatics and Systems Biology

Dr. Gabi Kastenmüller is group leader Metabolomics at the HelmholtzZentrum Institute of Bioinformatics and Systems Biology. Her research interests include:
• Human chemical individuality and its effects in health, disease, and treatment
• Metabolome-wide and genome-wide association studies
• Bioinformatic tools and databases for metabolomics data analysis and data interpretation

Meet Gabi Kastenmüller:
21/11 and 22/11 At Idea Lab 1 Best practices for multi-omics biomarker discoveries

Amye Kenall

BioMed Central

Amye Kenall is responsible for the management of big data journals at BioMed Central and is responsible for spearheading open data initiatives and policy at BioMed Central. She works closely with repositories and open source research tools in order to better the link between data and publication. She has several years of STM publishing experience, having worked across books and journals and having managed over 40 journals in that time, subscription and open access. Originally from Houston, Texas, Amye's career began in Washington, DC, working on publications for the World Bank and other international development agencies. She later moved to Taylor & Francis to work on their neuroscience journals before coming to BioMed Central.

Meet Amye Kenall:
22/11 At Educational session Publishing 


Professor Bartha Maria Knoppers

McGill University Canada
Center of Genomics and Policy

Bartha Maria Knoppers, PhD (Comparative Medical Law), holds the Canada Research Chair in Law and Medicine. She is Director of the Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University.
In 2007, she founded the international Population Project in Genomics and Society (P3G) and CARTaGENE Quebec's population biobank (20,000 indiv.). Former holder of the Chair d'excellence Pierre Fermat, she was named Distinguished Visiting Scientist (Netherlands Genomics Initiative) and received the ACFAS prize for multidisciplinarity.

Professor Knoppers is Chair of the Ethics Working Party of the International Stem Cell Forum, Co-Chair of the Sampling/ELSI Committee of the 1000 Genomes Project, and a member of the Scientific Steering Committee of the International Cancer Genome Consortium (ICGC). She holds four Doctorates Honoris Causa, is Fellow of the American Association for the Advancement of Science, of The Hastings Center (Bioethics) and of the Canadian Academy of Health Sciences (CAHS) and Officer of the Order of Canada and of Quebec.

Meet Bartha Knoppers:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE
22/11 At Closing debate: Privacy vs. Progress

Anna Kole


Anna Kole re-joined EURORDIS in 2013 as Registry and Biobank Projects Manager. She is part of the Operations Team where she manages EURORDIS' participation in projects focused on patient registries, biobanks, clinical bioinformatics, and -omics such as EPI-RARE and RD-CONNECT.

With a decade of international experience in health research and advocacy for people living with rare diseases and other vulnerable populations, her passion lies in using her background and experience to empower patients and their representatives as active participants in the research process. Anna served as Public Health Policy Manager at EURORDIS from 2008-2011. She has also previously held positions at Orphanet and the US National Organization for Rare Disorders (NORD).

Anna holds a Masters of Public Health from the University of North Carolina Gillings School of Global Public Health and a Bachelors in Genetics from Skidmore College. She has dual American and Polish citizenship and speaks English, Polish and French.

Meet Anna Kole:
21/11 and 22/11 At Idea Lab 3 Patient input in biobank and patient registries

Professor Jan-Eric Litton

BBMRI/Karolinska Institute

Jan-Eric Litton was appointed May 1, 2002 as computing professor in biomedical technology at the Karolinska Institutet. He conducted postdoctoral studies in California where he, in addition to participation in clinical and technical research, began systematic research into new scintillatorers using the synchrotron at Stanford 1986-87.

Jan-Eric Litton is one of the people behind Europe's first PET scanner. He has been one of the driving forces in the EU project GenomEUtwin where an infrastructure was built to link information between the 600 000 twins in seven European countries and Australia between 2002-2007. He led an infrastructure group in the ‘EU Coordination Action; Harmonising population-based biobanks and cohort studies to Strengthen the foundation of European biomedical science in the post-genome era ", and has been involved in the management of P3G since 2004, he led IWG2 (Information Curation and Information Technology) in PG3 during 2004-2008. At present he is the director for

Meet Jan-Eric Litton:
21/11 At the plenary morning session
21/11 and 22/11 At Idea Lab 2 Standardizing the changing world

Jeantine Lunshof

Harvard Medical School

Dr. Jeantine  Lunshof is an Assistant Professor based at the Section Molecular Cell Physiology at VU University Amsterdam, The Netherlands. She is a philosopher and bioethicist with research focus on the theoretical and normative aspects of systems and synthetic biology. Topics are pharmacogenomics, personalized medicine, and molecular technologies including biological engineering.

Holding a prestigious Marie Curie Fellowship, Dr. Lunshof currently works at Harvard Medical School, Department of Genetics, Church lab, where she pursues a training and research program on systems biology-based concepts of health and disease, and on the development of a systems approach for ethics. She is a co-instructor for Responsible Conduct of Science.  Jeantine is Ethics Consultant to the Personal Genome Project and to the Center for Excellence in Genomic Science ‘Causal Consequences of Variation' at the Department of Genetics, Harvard Medical School. In 2006, she developed together with Dan Vorhaus and George Church the innovative model of "open consent" that forms the normative backbone of the Personal Genome Project. She is an Affiliate Member of the NIH Pharmacogenomics Research Network, and serves on a number of Editorial Boards.

Meet Jeantine Lunshof:
21/11 At the Ethics Cafe
22/11 At Closing debate: Privacy vs. Progress

Pauline McCormack

PEALS (Policy, Ethics & Life Sciences) Research Centre
Newcastle University

Pauline has a background in education, social policy and participatory methods.  Her research encompasses disability, patient participation and bioethics with particular interests in notions of power, the patient voice, perceptions of quality of life and how policy serves individuals.

She is currently researching patient inclusion strategies for RD-CONNECT, which aims to provide an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for international rare disease research.  Twitter @paulinemacco

Meet Pauline McCormack:
21/11 At Idea Lab 3 Patient input in biobank and patient registries


Dr Roxana Merino Martinez

Karolinska Institutet

Roxana Merino Martinez works at Karolinska Institute as project leader. She has been active in the field of biobanking since 2008. At present, she takes part in several projects in Sweden and Europe such as the BiobankCloud, RD-Connect and BioMedBridges.
Her research background is informatics (focused on computing graphics and artificial intelligence) and bioinformatics (focused mainly on the management and analysis of high throughput experiment data).

Meet Roxana Merino Martinez
21/11 and 22/11 At Idea Lab 2 Standardizing the Changing World

Dr. Linda Mook

Mook Projects

Linda Mook is a medical informatician working in life science organisations and projects since obtaining her masters degree in medical informatics at the university medical centre Amsterdam (AMC). She has over 15 years work experience in profit and non-profit organisations. 

Today, the major focus of her work is the harmonisation and standardisation of patient information in both healthcare and research and where possible building bridges between the two domains. She currently works at the Groningen university medical centre (UMCG) as senior project leader on several biobank catalogue projects and information architecture initiatives. 

Meet Linda Mook at the Idea Lab ‘Standardizing the changing world' on 21 and 22 November.

Professor Madeleine Murtagh

University of Bristol, UK
Social Studies of Population Health Science

Professor Murtagh's research comprises social studies of transdiciplinary bioscience, biomedical and public health communities of practice, bringing a social ‘lens' to knowledge generation and translation in population science and technology, particularly in relation to population biobanks, birth cohort studies and randomised controlled trials.
This research focuses on three areas of work:

  • The Data Economy: data sharing and data access in the bioknowledge economy.
  • Epistemic Values in data governance, interpretation and knowledge-making.
  • Collaborative Intelligence in the development of bioknowledge communities of practice and stakeholder engagement.

Meet Madeleine Murtagh:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Jacquelien Noordhoek

Dutch Cystic Fibrosis Foundation

Jacquelien Noordhoek studied Social Sciences, (Child Psychology) and Business Administration. She achieved her degree in Social Sciences, Child Psychology in 1988. Later she went on to study Business Administration and achieved her MSc in 2011. Jacquelien practiced at the Free University of Amsterdam, where she was involved in research looking into cases of child abuse and neglect. Following this she began to focus in the area of the upbringing of children with severe chronic diseases.

Since 1998, Jacquelien is the Executive Director of the Dutch Cystic Fibrosis Foundation. This Foundation has expanded enormously under her supervision and is now the Dutch centre of expertise for Cystic Fibrosis (CF). The organization has initiated and developed the Dutch CF-Registry, a database in which all Dutch CF-patients participate. Her organization has also initiated the Dutch Clinical Trials Network for CF where they work together with national/international (scientific) organizations. The Dutch CF Foundation has been very successful in fundraising and is currently contributing to scientific research projects in The Netherlands and abroad. Jacquelien is vice-president of CF Europe and is currently working on her thesis on patient's participation in the field of CF. Patient participation is a very important element for Jacquelien and therefore she encourages patients and their families to get involved in policymaking, in prioritizing subjects for research and in fundraising.

Mrs. Noordhoek has focused much of her years of experience in representing the patients' perspective, presenting both nationally and internationally on the subject.

Meet Jacquelien Noordhoek:
22/11 At Idea Lab 3 Patient input in biobank and patient registries

Professor Gert-Jan B. van Ommen

Center for Medical Systems Biology (CMSB)
Leiden Genome Technology Center (LGTC)
Netherlands Medical Genetics Centre (MGC)
Centre for Biomedical Genetics (CBG)

Prof.dr. Gert-Jan B. van Ommen, PhD, has headed the Department of Human Genetics of the Leiden University Medical Center (LUMC) until his emeritate in September 2012. He has founded the Leiden Genome Technology Center (LGTC), a principal genomics facility in the Netherlands.

He is Director of the Centre for Medical Systems Biology (CMSB) one of four Centers of Excellence established in 2003 by the Netherlands Genome Initiative aiming to improve diagnosis, therapy and prevention of common and rare diseases. He is board member of the Netherlands Medical Genetics Centre (MGC), and the Centre for Biomedical Genetics (CBG).

Van Ommen has as major research interests in neuromuscular and neurodegenerative diseases, with a focus on Duchenne Muscular Dystrophy (DMD) and Huntington Disease (HD); and in the development and application of genome research and diagnostic technology for disease study, diagnosis, therapy and prevention, including the societal aspects of genetic advances.

As of 1998, his group has been pioneering the exon-skipping approach for therapy of DMD. After preclinical research in patient cells and mice, this approach is now the potential DMD therapy closest to market. In collaboration with the Leiden biotech company Prosensa, in 2007 the first in-man proof of concept study was performed and in 2009 Prosensa completed the first successful phase I/II systemic trial. Further exon skip developments are undertaken for HD, CADASIL, LGMD (dysferlin) and rheumatoid arthritis.

Van Ommen is a founding member of BBMRI (Biobanking and Biomolecular Research Infrastructure, the European ESFRI biobanking infrastructure established in 2007), connecting 50 partners and 150 associated partners in 27 European countries; founder and coordinator of the national Dutch biobank infrastructure BBMRI-NL, established in 2009, and board member (treasurer) of the of the Public Population Project in Genomics (P3G), the global biobanking organization, and participates in several EU FP7 Projects, including ENGAGE, analyzing GWA studies of approx. 90.000 samples across Europe.

He is Editor-in-chief of the European Journal of Human Genetics, past president of HUGO and of the European and Dutch Societies of Human Genetics. He is a member of several National, EU and HUGO committees in the fields of Genetics, Innovative Health Care, Genomics, Bioinformatics, Biobanking, Ethics and IP issues.

Meet Gert-Jan van Ommen:
21/11 At the opening and present both days

Kay Parkinson

Alström syndrome UK

Kay Parkinson developed a charity for a very rare condition to the point where the NHS commissioned their services. She is an inspirational figure-who has been instrumental in the development of patient led NHS funded multi-disciplinary clinics for Alström Syndrome.

Alström UK has led important initiatives in the field of rare disease in addition to being a partner in the Euro-WABB project, an EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

She developed links thoughout Europe and now expanding to start up Alström Europe.

Meet Kay Parkinson:
21/11 and 22/11 At Idea Lab 3 Patient input in biobank and patient registries

Markus Perola

National Biobank of Finland

Dr. Perola is leading the Quantitative Genetics-group in the Public Health Genomics Unit, at the National Institute of Health and Welfare, Finland. His studies have from been focusing on the genetics of common disorders and traits. Several research strategies, such as genome-wide association studies, linkage mapping in families and high density SNP maps and deep sequencing in population-based samples are applied to find genetic components of complex traits.

Dr. Perola is participating and an active member in several large international genetic consortium studies such as BBMRI ENGAGE, GenomEUtwin, GEHA and MORGAM. He has initiated and run for a long time the KTL/THL DNA repository and currently is the Chair of its steering board. Dr. Perola is also a section editor for the European Journal of Human Genetics and an active organizer and lecturer for several international courses concentrating on the analyses of genetic data.

Meet Markus Perola:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Nasrin Perskvist

National Cytology Biobank Sweden

The Swedish national biobanking infrastructure, (BioBanking and Molecular Resource Infrastructure of Sweden), has initiated a pilot study for the improvement and national harmonization of biobanking procedures in clinical cytology (2010). Because of the importance of cervical cancer screening, the biobanking initiative has been provided a vital resource for improvement and quality assurance of diagnosis, treatment and research.  I was appointed April 2011 as project leader for development and implementation of an infrastructure to provide good quality assurance and enable long-term storage of these samples. At present I am the director of the Clinical Cytology Biobank at the Karolinska Hospital. The system has now been launched and implemented throughout the different county councils and biobanking more than 60% of total liquid based gynecological cell samples annually in the country.

I gained my PhD in the field of infectious disease (2001) and conducted postdoctoral studies in Queensland University, Australia, where I participated in the genetic engineering of breast cancer cells (2002-2003).  Later on (2004-2010) my work and research experiences at the clinical Pathology-Cytology made me enable to apply this knowledge creating an excellence infrastructure for the biobanking of the liquid based cell samples. Moreover I worked as manager (2009-2010) in the "EU project for Surveillance of Tuberculosis" at the Institute for Infectious Disease Control, Stockholm, Sweden.

Meet Nasrin Perskvist:
21/11 At Educational session Sample & Data analysis

Professor David Porteous

University of Edinburgh
Generation Scotland

Professor David Porteous is Professor of Human Molecular Genetics & Medicine at the University of Edinburgh, Head of the Medical Genetics Section, Director of the Molecular Medicine Centre at the Institute of Genetics and Molecular Medicine and Director of the Genetics Core at the Wellcome Trust Clinical Research Facility Western General Hospital Campus.

A major focus of his work is the application of knowledge emerging from the Human Genome Project to the identification of risk factors, disease processes and new treatments for common disorders prevalent in the Scottish population.

This has evolved into a major collaborative initiative between the Scottish Medical Schools, the NHS in Scotland and allied research institutes called Generation Scotland ( )

Meet David Porteous:
21/11 At Educational session Sample & Data analysis

Jane Reichel

Senior lecturer in Administrative Law, Faculty of Law, Uppsala Universitet
Research Fellow in European Law, Faculty of Law, Uppsala University
Associate professor in Public Law, Faculty of Law, Stockholm University
Doctor of law in European law, Stockholm University

Jane Reichel received her law degree in law 1997 at Stockholm University. She worked as a clerk at the Administrative Court in Stockholm 1998-2001. Jane defended her doctorial thesis at Stockholm University in 2006, on European administrative law. In 2006 she worked as a project manager at the Swedish Agency for Public Management. In
2009 she was appointed associate professor in public law. Since 2011 she is a senior lecturer in administrative law at the Faculty of Law, Uppsala University. She is also connected to the Centre for Research Ethics & Bioethics, Uppsala University. Her current research focuses on processes of globalization of administrative law, especially within the area of data protection and biobanking. This project is performed in cooperation with Bio Medical Center, Uppsala University, within the project (Biobanking and Molecular Resource Infratructure of Sweden).

Meet Jane Reichel
21/11 and 22/11 At Idea Lab 2 Standardizing the Changing World

Cees Smit

UMC St Radboud Biobank

Dr Cees Smit has been active as a patient representative for over forty years. He is the chairman of the governance council of the UMC St Radboud biobank.

Cees Smit is policy advisor for EGAN, the European Patients Network for Medical Research and Health. EGAN is member of the European Patients' Forum (EPF). EGAN is focusing on genetic and most often also rare diseases.

Meet Cees Smit
21/11 and 22/11 At Idea Lab 3 Patient input in biobank and patient registries
22/11 At Closing debate: Privacy vs. Progress

Dr Morris Swertz

UMCG, Genomics Coordination Center

Dr. Morris Swertz is Assistant Professor and Head of Genomics Coordination Center, a bioinformatics core facility of UMCG and RUG of 15 programmers, postdocs and PhD students. Research and services include: development and hosting of >20 databases and software for biobank and large model-organism consortia, multi-omics data and ‘big data infrastructure' for analysis of next generation sequencing and imputation, including BBMRI-NL Genome of the Netherlands (a whole genome sequencing panel of 769 Dutch), BBMRI-NL imputation (>20.000 samples) and LifeLines biobank (165.000 individuals).

Dr. Swertz got his PhD in 2007 at the Groningen Bioinformatics Center while researching novel and powerful methods for the efficient modeling, production, and evolution of dynamic software infrastructures for systems genetics (NatRevGen, 2007). The result was MOLGENIS, a bioinformatics toolbox to rapidly generate suitable software infrastructures for life scientists to manage, QC, analyze and integrate complex phenotype and genotype data sets.

Now Dr. Swertz (co-)leads (inter)national bio/medical IT infrastructure projects as PI of the Biobanking taskforces in BBMRI-NL and BioAssist (NBIC), PI of the BBMRI-NL national bioinformatics infrastructure project, PI of the Dutch biobank catalogue, co-PI of the Genome of the Netherlands, co-PI of the harmonization work-packages in EU-BioSHARE, IT advisor to the BBMRI-NL steering committee, and as associate partner in (inter)national *omics data integration projects CTMM/Translational IT (TraIT), Top Institute Food & Nutrition biomarker research (TIFN), EU-GEN2PHEN, EU-BioMedBridges, EU-PANACEA (C. elegans), and EU-SYSGENET (mouse).

Meet Dr Swertz:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Professor Ann-Christine Syvänen

Professor of Molecular Medicine,
Department of Medical Sciences, Uppsala University

Professor Ann-Christine Syvänen began her career in the pharmaceutical industry in Finland. During the 1980s she took part in the invention of the so-called mini-sequencing method that is used today in major genotyping analyses around the world.
She took the unusual step from the industrial world to the academic world, having been recruited to Uppsala University in 1998. Three years later she built up the SNP&SEQ Technology Platform that today offers large-scale genotyping and next generation sequencing services to academic researchers. The SNP&SEQ Technology Platform is part of the genomics platform of Science for Life Laboratory in Uppsala and is funded by the Swedish Council for Research Infrastructures (VR-RFI). It is also one of the partners of the European Sequencing and Genotyping Infrastructure (ESGI) and of the Geuvadis Consortium, which both are both funded by EU FP7. 
 A-C Syvänen also heads the research group in Molecular Medicine, which started in 1998 at the Research Department of Uppsala University Hospital. The research group studies human diseases using modern methods for genomics and epigenetics, Itestablishes novel methods for genome analysis at the department, and applies them to medical or biological problems within the group and together with clinical collaborators.  The groups focuses on two diseases, pediatric acute lymphoblastic leukemia (ALL) and systemic lupus erythematosus (SLE).   

Meet Ann-Christine Syvänen
21/11 and 22/11 At Idea Lab 1 Best practices for multi-omics biomarker discoveries

Yuri van der Burgt

Center for Proteomics and Metabolomics
Leiden University Medical Center

Yuri van der Burgt works as an associate professor in the Center for Proteomics and Metabolomics at the LUMC. He obtained his Ph.D. in bio-organic chemistry at Utrecht University in the Netherlands in 1999. During his Ph.D. he worked on the structural analysis of biomolecules, carbohydrates in specific, using multiple analytical techniques. As a postdoc, he pioneered under supervision of professor André Deelder in establishing mass spectrometry platforms for clinical applications at the LUMC. This lab later developed into the current (glyco)proteomics and metabolomics group.

After a three-year period at biotech company Crucell, where he was responsible for the (mass spectrometric) analysis of recombinant proteins, he joined the FOM-Institute in Amsterdam to work on the theme of biomarker discovery in the Netherlands Proteomics Centre (NPC). Since 2007, he works on various mass spectrometry platforms applied both for in-depth analyses and high-throughput clinical proteomics profiling and identification studies.

Meet Yuri van der Burgt
21/11 and 22/11 At Idea Lab 1 Best practices for multi-omics biomarker discoveries

Jan Velterop

Academic Concept Knowledge Limited (AQnowledge)

Johannes (Jan) Josephus Marinus Velterop is a science publisher. Born in The Hague, Netherlands, he was originally a marine geologist and became a science publisher in the mid-1970s. He started his publishing career at Elsevier in Amsterdam. After a few years out of the scientific field as the director of the Dutch regional newspaper De Twentsche Courant, he returned to international science publishing at Academic Press in London. After Academic Press, he joined Nature as director for a short while, but moved quickly on to help get BioMed Central, the first commercial open access science publisher, off the ground.

Velterop was one of the small group of people who first defined ‘open access' in 2001 in Budapest, a meeting resulting in the Budapest Open Access Initiative.

In 2005 he joined Springer Science+Business Media in the UK as Director of Open Access. Springer is the first mainstream STM (Science, Technology, Medicine) publisher to offer open access as an option for virtually all its scientific and scholarly journals.

At the end of March, 2008, he left Springer to join Knewco, a company that uses semantic technology to accelerate scientific discovery. Since January 2009 he is involved in the Concept Web Alliance as one of the initiators. He is currently CEO of the recent start-up Academic Concept Knowledge Limited (AQnowledge), residing in Guildford, UK. As such he is a partner in the Innovative Medicines Initiative project known as OpenPHACTS. He is an active advocate of the use of microattribution (the hallmark of so-called ‘nanopublications').

Meet Jan Velterop:
22/11 At Educational session Publishing

Gonneke Willemsen

VU, Amsterdam

Gonneke Willemsen is an Associate Professor at the Department of Biological Psychology, VU University Amsterdam. She supervises data collection in the adult cohort of the Netherlands Twin Register and the NTR Biobank and has been involved in numerous heritability and GWA studies in the area of health, personality and lifestyle. She is the Chair of the Faculty Research and Ethics Review Board and recently coordinated the development of the "My NTR" portal, which is part of the BBMRI project "ELSI Portal met ELSI Apps ("MyBiobank")" and allows for personal feedback to a large number of participants.

Meet Gonneke Willemsen:
21/11 At the Ethics Cafe

Professor Bruce Wolffenbuttel

University of Groningen

Professor of Endocrinology & Metabolism. Additional activities: Scientific Director LifeLines Biobank & Cohort Study, Member Advisory Board GECKO, Groningen Expert Centre for Kids with Obesity, Member of the Board of the PREVEND Study; Medical Advisor Dutch Association for Addison and Cushing Patients; Member Diabetes Expert Network, Dutch Diabetes Federation; Secretary Dutch Society for Endocrinology; member editorial board Netherlands Journal for Diabetology.

Meet Bruce Wolffenbuttel:
21/11 At Educational session Biobanking practice & pre analytics, organized by BioSHaRE

Ele Zeggini

Wellcome Trust Sanger Institute

Ele's work aims to help elucidate the genetic determinants of complex human traits by using next-generation association studies to identify novel disease loci. Ele obtained a BSc in Biochemistry from the University of Manchester Institute of Science and Technology (UMIST) in 1999 and a PhD in Immunogenetics of Juvenile Arthritis from the arc Epidemiology Unit, University of Manchester, in 2003. She then undertook a brief statistical genetics post doc, focusing on rheumatic disorders, at the Centre for Integrated Genomic and Medical Research, University of Manchester, before moving to the Wellcome Trust Centre for Human Genetics, University of Oxford, to work on the genetics of type 2 diabetes.

In 2006, Ele was awarded a Wellcome Trust Research Career Development Fellowship to examine design, analysis and interpretation issues in large-scale association studies. She joined the Wellcome Trust Sanger Institute Faculty in November 2008 and leads the Applied Statistical Genetics group. Ele's scientific interests focus on the genetics of complex traits, primarily cardiometabolic and musculoskeletal phenotypes, and on addressing relevant statistical genetics issues.

Meet Ele Zeggini:
21/11 At the Sample & Data analysis Educational session