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Teemu Arina, CEO and founder of Dicole

Dicole Ltd., Finland

Teemu Arina has a professional career of over 15 years as a management advisor, technology entrepreneur, author and speaker. He is one of the forefront thinkers on the intersection of the human and the machine.

Mr. Arina is the founder and CEO of Meetin.gs, founder and CEO of Dicole, co-founder of the Quantified Self & Biohacking Finland movement and author of the forthcoming Biohacker's Handbook for upgrading ones life with biological and technological tools. Mr. Arina is a popular keynote speaker who has presented internationally in countries such as USA, UK, Japan, Russia, the Netherlands, and Germany.

 

Professor Olli Carpén

University of Turku, Finland

Olli Carpén is professor of biobank research at University of Turku, Finland and Auria Biobank (www.auriapankki.fi/en/) and Head of Diagnostic Pathology at Turku University Hospital. He earned his MD and PhD degrees at the University of Helsinki and continued as a post-doc at the Center for Blood Research, Harvard Medical School. After returning to Finland, he specialized in pathology and in 2004 he became a professor and head of pathology at the University of Turku. He has been actively involved in establishing the Finnish biobank network and especially in building the first Finnish hospital-integrated biobank, the Auria Biobank. His main research interests involve identification of prognostic and predictive biomarkers in ovarian and colorectal cancer and role of cytoskeleton in cancer biology.

 

Associate Professor Jim Dowling

Royal Institute of Technology, Sweden

Jim Dowling (Dr.) is an Associate Professor at KTH - the Royal Institute of Technology, as well as a senior researcher at the Swedish Institute for Computer Science. He is a researcher in the area of distributed systems, where his main interests are in the areas of Big Data and large-scale decentralized computer systems. He is also the coordinator of the EU FP7 BiobankCloud project (www.biobankcloud.eu), where they are developing Platform-as-a-Service support for Biobanking through a Big Data platform, based on Hadoop, to store, manage and analyze Next-Generation Sequencing data. As part of this initiative, he is lead developer for the Hadoop Open Platform (www.hopstart.org), a more scalable and highly available of the Hadoop distribution. He teaches courses in large-scale distributed systems and operating systems at KTH.

 

Professor Cornelia van Duijn

Erasmus MC, The Netherlands

Cornelia van Duijn received her PhD in genetic epidemiology from the Erasmus University Rotterdam in 1991. Since 2001 she is a full professor of GeneticEpidemiology at the Department of Epidemiology of the Erasmus University Medical Center.

Her work focuses on neurodegenerative disorders. She has identified genes involved in various neurodegenerative disorders including Alzheimer's disease, Parkinson's disease, Creutzfeldt-Jakob disease and open angle glaucoma. She has led genetic analyses in several international consortia including International Genetics of Alzheimer's disease (IGAP), the Alzheimer's Disease Sequencing Project (ADSP), EuroCJD and the International Genetics of Glaucoma Consortium (IGGC) and is a leader in several international genome wide association consortia including CHARGE (Cohorts for Heart & Aging Research in Genome Epidemiology, ENGAGE (European Network for Genetic and Genomic Epidemiology), and EAGLE (Early Genetics and Life course Epidemiology).

 

Professor Mats G. Hansson

Uppsala University, Sweden

Mats G. Hansson is Professor of Biomedical Ethics and Director of The Centre for Research Ethics & Bioethics (CRB) at Uppsala University. He has led several multi-disciplinary projects in bioethics, has published extensively in this area and has on-going collaborations in several European countries, partly associated with leading ELSI work packages of eight EU-projects. CRB involves a multi-disciplinary research group with 25 senior and junior scholars in house. Research topics such as patient autonomy, informed consent, biobanks, privacy, neuro-ethics and research governance are being addressed with a publication record in high quality international journals and monograph series. More information: www.crb.uu.se.

 

Jennifer Harris, PhD

Norwegian Institute of Public Health, Norway

Dr. Jennifer Harris is a Senior Researcher at the Norwegian Institute of Public Health in Oslo, Norway, where she leads the program in genetic epidemiology. She has interdisciplinary training in life-span development, genetics, behavior and epidemiology and was awarded a post-doctoral research fellowship at the Karolinska Institutet in Stockholm through the John D. and Catherine T. MacArthur Foundation, as part of the Research Network on Successful Aging. Since 2000 she has also been a consultant at the NIH, to the National Institute on Aging, Division of Behavioral and Social Research, where she advises on the development of research directions that integrate genetics/genomics with a broad behavioral and social science portfolio. Dr. Harris has been highly active in several international projects on the harmonization of large-scale biobanks in epidemiology. She led the European Union project Promoting Harmonization of Epidemiological Biobanks in Europe (PHOEBE) and she led the Norwegian research participation in the European Network of Genetic and Genomic Epidemiology (ENGAGE) and Genome-wide Analyses of European Twin Cohorts to Identify Genes in Common Diseases (GenomEUtwin). Currently, she participates in the 7th framework project Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU), where she leads the work package on Strategic Integration with other biobank projects. She is also leading the ethics work package in Biobank Norway, which is a national hub working with the BBMRI-ERIC. Dr. Harris founded the population-based twin panel study at the Norwegian Institute of Public Health under her research interests to integrate developmental approaches with genetic research into complex phenotypes. She developed the data as a national research resource that have become an integral part of the National Twin Register. Her current twin research uses the discordant twin design to study epigenetic influences on autoimmune disorders. She is also studying genetic and environmental influences on sex-differences in body composition, and is working in Nordic-wide twin study collaboration on cancer (NorTwinCan). In 2013 she won the James Shields Award for outstanding research in behavioral genetics using the twin method. She has broad commitment to the wider scientific community and serves on several expert panels, boards, steering groups, scientific advisory committees, and editorial boards.

 

Ari Haukkala, PhD

University of Helsinki, Finland

Ari Haukkala is University Lecturer in Social Psychology at the University of Helsinki. His research focuses on three main areas, 1) psychosocial factors in health and well-being, 2) theory-based behavior change interventions, and 3) psychosocial aspects in genomic research.

He is interested how to use psychological theory to motivate and help individuals to change health-related behaviors. He has been involved in intervention studies aiming at smoking prevention, preventing diabetes by lifestyle changes among middle-aged adults and increasing physical activity among vocational students. His most recent grant is related to use mobile technology and sensors in health behavior change (www.thepreciousproject.eu). In the area of genomic research, key questions include what the psychological consequences of genetic testing among families with heritable colon cancer. He has been involved in collaboration study with German and Austrian partners in ELSAGEN program that involved translational research on how genomic information could be used on the patient level. On autumn 2014 he will start research project on Public understanding of genetics and genetic risk communication in the era of whole genome sequencing.

 

Marianne K. Henderson, M.S.

NIH, NCI, USA

Ms. Henderson is the Chief, Office of Division Operations and Analysis in the Division of Cancer Epidemiology and Genetics of the U.S. National Cancer Institute. She trained in Zoology and Marine Ecology at the University of Maryland, College Park. She has post graduate training in molecular biology and genetics. After working in a molecular genetics laboratory in the Division of Basic Sciences, NCI, she transitioned into scientific program management in the Office of the Director, Division of Basic Sciences. In 1999, she was named the Chief, Office of Division Operations and Analysis in NCI's Division of Cancer Epidemiology and Genetics. In this role, she is responsible for Division operations, project and contract management, fiscal and scientific reporting; strategic planning; technology transfer; development and oversight of computing contract management; and laboratory/biorepository infrastructure needed for large-scale molecular epidemiology studies for the Division. She is a founding member of the NCI Biospecimen Coordinating Committee established by the NCI Biorepositories and Biospecimen Research Branch (BBRB) (née OBBR) and participated in the development and revision of the first and second editions of NCI's Best Practices for Biospecimen Resources.

Since 1999, she has been a member of the International Society for Biological and Environmental Repositories (ISBER) and served as ISBER President 2011-2012. Marianne is currently the Chair of the ISBER Organizing Advisory Committee. She is also a member of the BBMRI LPC SEAB and BBMRI.se Advisory Boards; member of the US Interagency Working Group on Scientific Collections; Steering committee member of the International Agency on Cancer's LMIC Biobank and Cohort Network (BCNet); and the US-France Working Group on Large Scale Infrastructure for Life Sciences. Ms. Henderson is actively involved in human biospecimen management process improvements in processing, handling, technology transfer, and repository automation.

 

Heidi Howard, Phd, Senior Researcher

Centre for Research Ethics and Bioethics, Uppsala University, Sweden

Heidi received her undergraduate and doctoral degrees in Biology from McGill University (Montréal, Canada). The focus of her PhD was neurogenetics and she continued her genetics training in psychiatric genetics at the Centre for Genomic Regulation in Barcelona (Spain) and at the Douglas Hospital in Montréal (Canada). With an Erasmus Mundus fellowship, she completed the Erasmus Mundus Master of Bioethics programme in 2008. She then spent four years with the support of the European Commission FP7 Marie Curie Career Development Awards (2009-2011; 2011-2013) which allowed her to work on the ethical, legal and social issues (ELSI) related to genetics and genomics as well as biobanking at KULeuven (Belgium) and inserm (France) respectively.

Currently, her main areas of research are the ELSI of risk information in genetics and genomics, direct-to-consumer genetic testing, public health genomics, new genomic technologies, participant-centric research initiatives and the translation of genomics from the laboratory to the clinic.

Dr. Howard is also an invited scholar at the Centre of Genomics and Policy at McGill University and a member of the Public and Professional Policy Committee of the European Society of Human Genetics.

 

Professor Michael Hummel

Institute of Pathology, Charité, Germany

Michael Hummel is a professor of Experimental Hematopathology at the Institute of Pathology, Campus Benjamin Franklin, Charité. Hummel studied biology in the University of Cologne, and completed his promotion in biochemistry at the Free University Berlin in 1990 under the supervision of Prof. Erdmann and Prof. Stein. Since 2010 Hummel has been the professor at Charité - Berlin and the princible investigator of many funded scientific projects. Prof. Hummel has supervised more than 16 medical and basic scientific doctoral thesis and influences currently as the Associate editor of BMC Cancer as well as a member of the steering committees for ICGC-MMML-Seq, and Tissue biobanks of the Comprehensive Cancer Centres. Prof. Hummel is the coordinator and PI of the subproject 3 ("Vernetzung der Referenzzentren für Lymphknotenpathologie") within the competence network, "Maligne Lymphome", Spokesman of the working group "Biomaterialbanks" at the TMF, Berlin and the National coordinator for Germany in BBMRI. Prof. Hummel also established, and is running the lymphoma tissue bank within the competence network "Maligne Lymphome" e.V. and operates as the Head of the Central Biobank of the Charité (ZeBanC). Prof. Hummel's scientific focus is on Malignant lymphoma (especially B-cell lymphoma, Hodgkin lymphoma), molecular pathogenesis, epigenetic mechanisms, molecular reprogramming, molecular biology and pathology as well as High throughput technologies, Deep sequencing, Gene expression profiling, SNP array, microRNAs.

 

Professor Kristian Hveem

Norwegian University of Science and Technology, Norway

Kristian Hveem, MD, PhD, is a professor in Clinical Epidemiology at the Faculty of Medicine, the Norwegian University of Science and Technology (NTNU), Norway. He acts as Director of HUNT Biobank, NTNU and the National CONOR (Cohorts of Norway) biobank. Since 2011, he has been the leader of Biobank Norway (BBMRI.no), comprising all major population based and clinical biobanks in Norway.

Since 2010, he has been instrumental in the establishment of the Danish National Biobank and held the position as its first Director from 2010-2013. He has served as a member of the Biobank Infrastructure Committee (BISC) of the Swedish Research Council (2008-09) and lead the work on a national report on "Potential for Commercial use of population based biobank" (2009), initiated by the Research Council of Norway. He is a member of the SAB of BBMRI.se, the SEAB of BBMRI-LPC and the international steering committee for P3G and a senior advisor of China National Gene Bank.

His main research fields are population genomics (CVD) and gastroenterology.

 

Anu Jalanko, PhD

National Institute for Health and Welfare (THL), Finland

Anu Jalanko is the Head of THL Biobank and Public Health Genomics Unit at THL. The unit is responsible for biobanking of DNA samples of the majority of Finnish population cohorts and is running the Meilahti Integrated Biobank Infrastructure (MIBI, a joint project between THL and Institute for Molecular Medicine Finland, FIMM). She is the National Coordinator of BBMRI.fi, a member of BBMRI-ERIC Management Committee and a member of the Board of BBMRI.se. She has a long experience as a research director and has been participant PI in two consecutive Centre of Excellence programmes of the Academy of Finland.

She has been the coordinator of the FP6 project NCL-MODELS, vice coordinator of Nordic Centre of Excellence in Disease Genetics and responsible for THL participation to the BBMRI Preparatory Phase project (FP7). Currently she participates in two major FP7 projects as a PI: BBMRI-LPC and DEM-CHILD. The scientific career of Anu Jalanko consists mainly of studies of molecular mechanisms behind rare genetic diseases, with current interest in cell biobanks of rare diseases.

 

Pekka Kahri, Director

Tekes, Finland

Pekka Kahri is director at Tekes, the Finnish funding agency for innovation. Tekes is the main public funding organization for research, development and innovation in Finland. At Tekes, he is running a customer service unit for large enterprise and public organization customers, with a team of 12 senior advisers and an annual volume of funding about 45 M€. The customer base includes health, wellness, medical, pharmaceutical and food industries and service sector companies as well as public research organizations active in the field as well as public social and health services run by municipalities and hospital districts. Pekka Kahri holds an MSc in engineering physics & medical engineering and prior to joining Tekes 2006 has an extensive work experience in medical technology industry.

 

Professor Bartha Maria Knoppers

McGill University, Center of Genomics and Policy, Canada

Bartha Maria Knoppers, PhD (Comparative Medical Law), holds the Canada Research Chair in Law and Medicine (Tier 1: 2001 - ). She is Director of the Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University. 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. She also received an award "Prix Montreal In Vivo: Secteur des sciences de la vie et des technologies de la santé" in 2012 and in 2013 was named "Champion of Genetics" by the Canadian Gene Cure Foundation.

 

Professor Helena Kääriäinen

National Institute for Health and Welfare, Finland

Professor Helena Kääriäinen (MD, PhD) is a specialist in medical genetics. She has had different academic and clinical positions in medical genetics, especially related to counselling, education and information in the field, including about eight years as the Professor of Medical Genetics at Universities of Helsinki and Turku. Since 2007 she is research professor at National Institute for Health and Welfare. In this institute she has several roles including oversight of the Institute's sample collections and involvement in national plan for rare diseases.

She has been a member in board/executive board and Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG) since 2001 and at present she is President of the Society. She was a WP/UNIT leader in EuroGentest NoE and EuGT2; in these projects her main task was to create guidelines and tools for improving the quality of genetic counselling related to genetic testing in Europe. She is the national representative in the EU Expert Committee for Rare Diseases. She has been member of several medical/research ethical committees. Her research interests are rare diseases, genetic testing and counselling. She has about 170 peer reviewed articles and has written numerous chapters in mainly Finnish text books of medical genetics for professionals and lay people.

 

Professor Tarja Laitinen

University of Turku, Finland

Dr Tarja Laitinen, MD is the Professor and Chief Physician of the Department of Pulmonary Medicine and Clinical Allergology at the Turku University Hospital since 2011. Before that she has held several clinical and research positions in academia and in biotech industry.

Post-doctoral education in the Centre for Genome Research, MIT, USA (1996, 1998-99). CSO and co-founder of the BioHealthCareInformatics Company Geneos Ltd (2002-07). She has contributed greatly into the development of the concept of the clinical biobank network in Finland.

She has also represented Finland as an expert member in the meetings of the Assembly of Members of BBMRI.ERIC. Her research area has been since 1994 the genetics of complex disorders, especially respiratory diseases. Lately she has developed new computational approaches in subphenotyping of complex traits using large scale information from electronic Medical Records.

 

Professor Marialuisa Lavitrano

Milano-Bicocca University

Prof. Marialuisa Lavitrano is the Coordinator of BBMRI Italian node and the BBMRI-IT ELSI common service. She is professor of Pathology and director of the School of Oncology at the Milano-Bicocca University. As pro-rector for international affairs (2006-2013) she was responsible of the international teaching and research activities and coordinated Faculty, Staff and Students training and mobility.

Prof. Lavitrano is member of the Commission for strategic planning appointed by the Ministries of Research and of Health. For four years, she developed the international strategies for the Ministry of Health, participated to the Inter-ministerial Commission for International Research - JPI, Road map ESFRI, EraNet, IMI - for strategic planning and evaluation of grant proposal, BioMedical Science sector, and coordinated the Italian participation in the BioMedical Sciences ESFRI roadmap. Prof. Lavitrano participated in the preparatory phase of BBMRI, ECRIN and EATRIS as Italian member state representative. Prof. Lavitrano has a long-term experience in managing R&D projects with a translational approach for the transfer of the scientific results to the clinical practice. Moreover, she is interested in the bioethical aspects of science and research and participated at Bioethic Commissions of the Council of Europe, of the Vatican, and of the Italian government.

 

Professor Jan-Eric Litton

Director General, BBMRI-ERIC, Austria

Jan-Eric Litton is Professor of Biomedical Computing Technology at the Karolinska Institutet, Stockholm, Sweden, was appointed Director General for BBMRI-ERIC, 22 January 2014. Read more at www.bbmri-eric.eu.

Litton was Executive Director and head of one of the largest medical infrastructure in Sweden - BBMRI.se (The Biobanking and Molecular Resource Infrastructure of Sweden), www.bbmri.se until 1 February 2014. He also coordinates the Nordic BBMRI (Denmark, Sweden, Norway, Finland, Island, Faroe Island and Estonia). Jan-Eric Litton is renowned for his expertise in biobanking and leadership in large-scale projects. He is also heading the development of e-epidemiology by using Internet, cell-phones, digital paper and digital TV for collecting epidemiology data. Jan-Eric Litton is involved in 8 large EU project in medicine, including the: BiobankCloud - Scalable, Secure Storage of Biobank Data.

He was 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" 2006, and has been involved in P3G since 2004, he led IWG2 (Information Curation and Information Technology) in P3G during 2004-2008. He was the co-director for the Swedish LifeGene initiative (www.lifegene.se), a prospective cohort based biobank until 2010. Since 2012 Litton is a part of the e-science initiative in Sweden with a yearly budget from the Swedish government - www.e-science.se.

Jan-Eric Litton has also made major contributions to the current knowledge in Positron Emission Tomography (PET) and was one of the first researchers showing receptor binding with PET technique. He did is post doc at The Research Medicine Department of Lawrence Berkeley Laboratory and Donner Laboratory of the University of California, USA, 1986-1987.

 

Marja Makarow, vice-president

The Academy of Finland

Marja Makarow is vice-president of the Academy of Finland, the public funding agency for fundamental research. She is former vice-rector for research and professor of applied biochemistry and molecular biology at the University of Helsinki. She is former chief executive of the European Science Foundation. Marja Makarow was advisor to the EU Commissioner for Research and Innovation in the European Research Area Board ERAB, and to the Finnish Government in the Council for Research and Innovation Policy. She was president of the European Molecular Biology Conference (EMBC/EMBO) and delegate of Finland in the council of the European Molecular Biology Laboratory (EMBL), and established the Institute for Molecular Medicine Finland, a member of the Nordic EMBL Partnership for Molecular Medicine. She is chair of the ERC Starting grants panel on genomics, genetics, systems biology and bioinformatics, member of the governing board of the European Institute of Innovation and Technology (EIT) and former chair of the jury of one the world's largest innovation prize, the Millennium Technology Prize. Marja Makarow is co-author of the Finnish strategy for health research and innovation and chair of the Finnish Research Infrastructure Committee.

 

Professor Gert-Jan B. van Ommen

Leiden University Medical Center, the Netherlands

Prof. dr. Gert-Jan B. van Ommen, PhD, is the former head of the Department of Human Genetics of Leiden University Medical Center (LUMC) (1991-2012). He established the Leiden Genome Technology Center (LGTC), and the Center for Medical Systems Biology (CMSB). He is Editor-in-chief of the European Journal of Human Genetics, past president of HUGO (1998-2000) and of the European and Dutch Societies of Human Genetics, treasurer of the Public Population Project in Genomics and Society (P3G). His main aim is to help improving diagnosis, therapy and prevention of rare and common diseases. He is National Coordinator or Ophanet, founding member of BBMRI, the European Biobanking and Biomolecular Research Infrastructure, and director of BBMRI-NL (www.bbmri.nl). As the Dutch National Coordinator of BBMRI-ERIC he is observer of the General Assembly of BBMRI-ERIC and member of its Management Committee. Members of his department have contributed to the finding of the gene defects and disease mechanisms underlying Duchenne Muscular Dystrophy, Huntington Disease, Polycystic Kidney Disease, Hereditary Neuropathies, Fragile X Syndrome, Rubinstein-Taybi Syndrome, Familial Hemiplegic Migraine and FacioScapuloHumeral Muscular Dystrophy. His group was an early developer of molecular diagnostics for genetic disease, performed the first prenatal diagnosis using DNA markers of a disease (DMD) of which the gene was (then) still unknown, developed many gene mapping techniques, generated the first megabase map of a human gene (DMD), and developed several innovative mutation detection techniques. More recently his group pioneered the exon-skipping approach for therapy of Duchenne Muscular Dystrophy. Further exon skip developments are undertaken for HD, CADASIL, LGMD (dysferlin), and inflammatory and fibrotic diseases.

Professor van Ommen has been supervisor of 44 PhD students and published and co-published ca. 600 papers, reviews, book chapters and policy documents, including ca. 500 papers in peer-reviewed journals, with 26.000 citations (av. 40 citations per paper, H-index 78). Of the 64 papers receiving over 100 citations 45 originate from his own group.

 

Professor Kimmo Porkka

University of Helsinki, Finland

Kimmo Porkka M.D, Ph.D. is a professor of clinical hematology at the University of Helsinki and his current clinical position is Head of the Hematology Division at the Helsinki University Central Hospital. Prof. Porkka received his medical degrees at the Universities of Turku and Helsinki. He has received clinical training in oncology, internal medicine and hematology.

Prof. Porkka's research experience includes clinical epidemiology, clinical breast cancer research, human molecular genetics (genetic mapping of complex diseases), basic and applied cancer research on characterization of leukemia-specific proteins and ligands (post-doctoral visit at the Burnham Institute, La Jolla, USA). Prof. Porkka's recent research interest relate to molecularly targeted therapies and immunotherapy of hematological malignancies. He has been the principal investigator in several Phase I-III clinical studies (academic and company-sponsored) on chronic myeloid leukemia and acute lymphoblastic/myeloid leukemia and performed closely linked basic science projects on leukemic stem cell targeting and immunomodulatory effects of tyrosine kinase inhibitors at the Hematology Research Unit Helsinki.

Prof. Porkka is the principal investigator in the Finnish Hematology Registry and Biobank (FHRB; hematology.fi/fhrb), which is a national, population-based registry and biobanking effort commencing in 2011. The first scientific project utilizing the FHRB is an in vitro highthroughput drug screening and molecular profiling on primary cells aiming in individually tailored therapy for relapsed or refractory AML. Prof. Porkka has more than 90 original publications in international peer reviewed journals, such as New England Journal of Medicine, Nature Medicine, Nature Genetics, PNAS, Journal of Clinical Oncology, Blood and Leukemia. Prof Porkka`s main collaborators include prof. Bengt Simonsson and the Nordic CML Study Group, prof. Olli Kallioniemi, Finnish Institute for Molecular Medicine (highthroughput compound screening in acute leukemia, molecular profiling), Dr. Kari Aranko, Finnish Red Cross Blood Service (leukemia biobanking), Dr. Petteri Arstila, Haartman Institute, Dept. of Immunology, Univ. of Helsinki, Finland (T-cell immunology), Dr. Ruth Seggewiss, Univ. of Wurtzburg, Germany (transplantation and clinical immunology) and Bristol-Myers Squibb, Celgene, Novartis and Pfizer (Phase I-III drug studies, basic research).

 

Professor Markus Perola

National Institute for Health and Welfare, Finland

Dr. Perola (M.D., Ph.D, Research Professor) is leading the Quantitative Genetics-group in the Public Health Genomics Unit, at the National Institute of Health and Welfare, Finland and a visiting professor in University of Tartu, Estonian Genome Project, Estonia.

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 BioShare, BBMRI, ENGAGE, GenomEUtwin, GEHA and MORGAM and is the coordinator for a FP7 biobanking infrastructure project BBMRI-LPC. He has initiated and run for a long time the KTL/THL DNA repository. 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. He is a member of the coordinating ethical board of the Helsinki University hospital. His publication list includes over 180 original articles in leading genetic and cardiovascular journals. Dr. Perola is also a practicing physician in Helsinki Western Emergency Hospital, Helsinki, Finland.

 

Professor Samuli Ripatti

Hjelt Institute and Institute for Molecular Medicine Finland (FIMM)

Samuli Ripatti is a Professor of Biometry at University of Helsinki and a leads a research group at Insititute for Molecular Medicine Finland (FIMM). His group studies the genome-wide variation and its relation to complex traits and diseases, with a particular focus, but not limited to, on cardiovascular diseases and metabolism. They use the genetic screens in Finnish population and disease samples to learn about disease mechanisms and risks. Cardiovascular diseases and risk factors are often used as models for genetics of complex diseases and statistical methods development.

Dr Ripatti is an honorary faculty member of the Wellcome Trust Sanger Institute, member of the ESHG Scientific Program Committee, Steering Group member of FP7 BioSHaRE project, International Steering Committee member of P3G, Editorial Board member of Frontiers in Cardiovascular Medicine- Cardiovascular Epidemiology. He has been actively involved in large-scale EU projects on genetic research (e.g. FP7 ENGAGE, BioSHaRE, CENTER-TBI) and several global complex disease genetics consortia (e.g. Global Lipid Genetics Consortium, Cardiogran+C4D, DIAGRAM, CHARGE, MAGIC..). Dr. Ripatti is a member of SISu project Steering group and leading the data centre as well high throughput imputation effort.

 

Laura Lyman Rodriguez, PhD

National Human Genome Research Institute National Institutes of Health, USA

Laura Lyman Rodriguez, PhD, is the Director of the Division of Policy, Communications, and Education at the National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH). Dr. Rodriguez works to develop and implement policy for research initiatives at the NHGRI, as well as trans-NIH programs. She is particularly interested in the policy and ethics questions related to the inclusion of human research participants in genomics and genetics research. Among other activities, Dr. Rodriguez has provided leadership for many of the policy development activities pertaining to genomic data sharing and the creation of the database for Genotypes and Phenotypes (dbGaP) at the NIH.

Dr. Rodriguez received her bachelor of science with honors in biology from Washington and Lee University in Virginia and earned a doctorate in cell biology from Baylor College of Medicine in Texas.

 

Arndt Schmitz, PhD

Bayer Pharma AG, Germany

Dr. Arndt A. Schmitz is Head of Research Biobank at Bayer Pharma's Global Drug Discovery. He studied chemistry at Marburg University, including a half year, ERASMUS-financed stay at Bologna University, Italy, and his thesis performed at the Max-Planck-Institute of Biophysics at Frankfurt. Subsequently, he did his PhD in biochemistry at the Biocenter of Basel University, Switzerland. As a post-doc at Cold Spring Harbor Laboratory in the USA he continued his work on signal transduction.

Dr Schmitz then joined Schering AG (Berlin, Germany) as a biotechnology group leader. In 2008, he established the Research Biobank. Its mission is to provide Bayer Pharma scientists with speedy and compliant access to clinical specimens of standard of care patients outside clinical trials, in particular for biomarker research purposes. He has spoken and published extensively on biobanking, addressing aspects from biotechnology to ELSI and open innovation.

 

Sirpa Soini

National Institute for Health and Welfare, Finland

Sirpa Soini is lawyer who is specialised on biomedical law & regulation. She has business law background combined with academic research and collaboration in the vast field of health and biomedicine. Currently she works at National Institute for Health and Welfare (THL) as senior legal adviser and has a key role in THL's biobanking and IPR-activities. She has a long experience on medical research ethics and she chairs THL's internal research ethics committee. Her special interests include translational medicine, genomics and biobanking. Soini is member of the National Medical Research Ethics Committee (TUKIJA) and the National Steering Group of Biobank Act (Ministry of Health and Social Affairs). She is a legal adviser to BBMRI.fi. Her pending doctoral dissertation studies legal pluralism of the biomedical regulation.

 

Ove V. Solesvik

HUNT Biosciences, Norway

Ove V. Solesvik joined Lifandis AS (former HUNT Biosciences AS) as its Chief Executive Officer in May 2013. He joined the company with an extensive international career within life science, comprising more than 25 years of management experience from both the public and private sectors. Previous positions include Managing Director at Berkeley Heart Europe AS, President of Medinnova SF, President and Vice President R&D of Pharmacia Biotech AS, Technology Attaché and Station Manager at Innovation Norway, Boston office, as well as Life Science Coordinator at Innovation Norway HQ. He also held several research and managerial positions at Hafslund Nykomed AS, and he spent 3 years as visiting scientist at National Cancer Institute, Frederick MD, USA.

He holds a MSc in biophysics from the University of Trondheim and education from advanced international management programs.

 

Erik Tambuyzer, Ph.D.

Belgium

Since 2012, Erik Tambuyzer consults on projects related to rare diseases and orphan drugs, patient relations, and innovation in (personalized) healthcare.

Erik is the Chairperson of the Board of the Center for Medical Innovation (CMI), in Flanders, Belgium, working on translational biomedical research and biobanking. He is a member of the Belgian national advisory committee on rare diseases and orphan drugs and a member of the Royal Flemish Academy of Belgium for Science and Arts. Erik is also Chairing the BioPontis Alliance For Rare Diseases, USA, being set up for the development of orphan drugs. From 1992-2010, Erik worked at Genzyme Corp. as Senior Vice-President, and from 1985-1992, he was founder and general manager of the Belgian biotech company Innogenetics. Before that time, he worked at Baxter healthcare Europe.

Erik was a founding Board member and Vice-Chair of EPPOSI, the European Platform for Patients' Organisations, Science & Industry. From 1996-2011, he was a founding Board member and Chair of EuropaBio, the European Association for Bio-industries. He got the first EuropaBio Award of Merit in 2011.

He has a master's degree (1972) in biosciences/bio-engineering, and a Ph.D in biosciences (1977) from Leuven University (KULeuven), Belgium.

 

Effy Vayena, PhD

University of Zurich, Switzerland

Effy Vayena (MSc, PhD) is a senior research fellow at the Institute of Biomedical Ethics (IBME), University of Zurich and the academic coordinator of the PhD program in Biomedical Ethics and Law/medical track. Before joining the IBME she worked for several years at the World Health Organization headquarters where she was involved with the Organization's activities on research ethics, and reproductive health research. She has served as a member of the WHO's Research Ethics Review committee and she continues consulting for the Organization.

She has published on the ethics of health research, on issues surrounding assisted reproductive technologies, biobanks, pediatric research, genomics and research with online health data. Her current research focus is on ethical and policy issues that arise in the areas of genomics (including direct-to-consumer genomics), personalized medicine, the novel uses of online health data for research, data -sharing for health research and health research led by participants.

 

Jantina de Vries, PhD

Department of Medicine, University of Cape Town, South Africa

Jantina originally trained in sociology and transitioned to bioethics soon after graduation. She joined the Department of Medicine at the University of Cape Town in 2013 as a Senior Researcher in Bioethics. Her expertise is in the area of ethical issues in genomics research in Africa. Jantina is the Chair of the H3Africa Working Group on Ethics and a member of the Regulatory and Ethical Working Group of the Global Alliance.

Jantina obtained her DPhil at the University of Oxford (2011), and MSc degrees in sociology at Wageningen University (2003) and the European University Institute (2004). She was a Postdoctoral Fellow at the Human Genetics Department at UCT (2011-2013). She was previously the ethics coordinator for MalariaGEN. Her PhD explored questions around ethnic stigmatisation in population genomic research in Africa. Jantina has published widely on ethical issues in genomics research.

 

Professor Eero Vuorio

Director of Biocenter Finland University of Helsinki, Finland

Eero Vuorio, an M.D. Ph.D., a Professor of Molecular Biology and Chancellor emeritus of the University of Turku, worked as a part-time Executive Manager of BBMRI during its Preparatory Phase in 2008-2011.

He has conducted his research on molecular biology of connective tissue components and animal models of cartilage and bone diseases in Turku, Finland, as a visiting scientist at the University of Chicago, ETH-Zürich, and the M.D.Anderson Cancer Center in Houston. He has chaired the Research Council for Health (Academy of Finland), and the National Advisory Board for Research Ethics and the National Research Infrastructure Committee in Finland as well as the European Molecular Biology Laboratory (EMBL) Council. He also had expert duties at the European Commission, UNESCO (International Bioethics Committee) and the European Research Council (ERC) as the chair of the Identification Committee.


Professor Kurt Zatloukal

Medical University of Graz, Austria

Kurt Zatloukal is Professor of Pathology at the Medical University of Graz and is director of the Christian Doppler Laboratory for Biospecimen Research and Biobanking Technologies. He coordinated the preparatory phase of the European Biobanking and Biomolecular Resource Research Infrastructure (BBMRI, 2008-2011) within the EU's Framework Programme 7 (FP7), which has been implemented under the ERIC (European Research Infrastructure Consortium) legal entity with its headquarters (central executive management) in Graz, Austria. BBMRI will provide access to high quality human biological samples and associated information to enable further developments in personalized medicine and disease prevention. Furthermore, he led the work package on the development of new European standards and norms for tissue-based biomarkers in the context of the FP7-funded large integrated project Standardisation and improvement of generic pre-analytical tools and procedures for in-vitro diagnostics (SPIDIA). Moreover, he contributed to the OECD best practice guidelines for biological resource centres, the regulations for genetic testing of the Austrian Gene Technology Law, and the opinion on Biobanks for research of the Bioethics Commission at the Austrian Federal Chancellery. He has published 184 scientific papers and is inventor of 15 patents.