Consumer involvement and informing the public

Transcriptie

1 Consumer involvement and informing the public 23 January 2007 PHGen Dr. Cor Oosterwijk Director Dutch Genetic Alliance (VSOP) Secretary General European Genetic Alliance Network (EGAN)

2 Aangesloten organisaties ADCA-Vereniging Nederland Stichting voor Afweerstoornissen Vereniging van Allergie Patiënten Nederlandse Vereniging voor Hereditair Angio-oedeem en Quincke s oedeem Vereniging Anusatresie Belangenvereniging Syndroom van Beckwith-Wiedemann Nederlandse Vereniging van Blinden en Slechtzienden Stichting Bloedlink Borstkanker Vereniging Nederland Nederlandse Cystic Fibrosis Stichting Stichting Dariër Patiënten DEBRA Nederland Stichting Down s Syndroom (SDS) Nederlandse Vereniging van Dystoniepatiënten Vereniging van Ehlers-Danlos Patiënten Vereniging van Patiënten met Erythropoetische Protoporphyrie Fabry Support & Informatie Groep Nederland FODOK - Nederlandse Federatie van Organisaties van Ouders van Dove Kinderen Gaucher Vereniging Nederland HAND-vereniging Nederlandse Vereniging van Hemofilie Patiënten Hemochromatose Vereniging Nederland Stichting Hernia Diafragmatica Belangenvereniging Von Hippel-Lindau Vereniging Ziekte van Hirschsprung Vereniging van Huntington Patiëntenvereniging Belangenvereniging Van Kleine Mensen Nederlandse Klinefelter Vereniging Vereniging Oudergroep Klompvoetjes LAPOSA - Landelijke Patiënten- en Oudervereniging voor Schedel- en Aangezichtsafwijkingen Nederlandse Leverpatiënten Vereniging Vereniging voor mensen met het 'Van Lohuizen syndroom' Macula Degeneratie Vereniging Contactgroep Marfan Nederland Stichting MRK-vrouwen (Mayer- Rokitansky-Kuster syndroom) Belangengroep M.E.N. Vereniging Morquio NeuroFibromatose Vereniging Nederland Stichting Noonan Syndroom Nederlandse Obesitas Vereniging Stichting DOS 'De Ontbrekende Schakel' OSCAR Holland, multi-etnische stichting voor patiënten en dragers van sikkelcelanemie en thalassemie Vereniging Osteogenesis Imperfecta Nederlandse Phenylketonurie Vereniging Prader-Willi/Angelman Vereniging Stichting Primaire Ciliaire Dyskinesia Belangengroep Retina Nederland Stichting Rubinstein-Taybi Syndroom Vereniging van Scoliosepatiënten Stichting Shwachman Syndroom Support Holland Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting (VOKS) Vereniging Spierziekten Nederland (VSN) Volwassenen en Kinderen met Stofwisselingsziekten (VKS) Stichting Tubereuze Sclerosis Nederland Friedrich Wegener Stichting

3 Mission statement Based on the patients perspective, VSOP stimulates the application and availability of genetic and biomedical knowledge, to contribute to the health and well-being of current and future generations.

4 Community genetics Informed decision making Genetic diagnosis and screening Perinatal prevention and care

5 Genetic Resource and Information Center Partnership of medical specialists and patient organizations Websites: Life sciences & personal health Pregnant women Future pregnant women Individual preconceptional questionnaire Preconceptional foliate use Genetics for children aged Genetics for Turkish-speaking people

6 From gene to quality of life GENE GENETIC SUSCEPTEBILITY PROFILING / DIAGNOSIS PREVENTION / PREDICTION / PROGNOSIS THERAPY QUALITY OF LIFE

7 General remarks Genomic-based innovation is = shared responsibility based on partnership Identify common and separate information and participation needs of consumers, now-and-thenpatients, people with genetic risk and chronic patients Does it harm me? vs How can it benefit me? Confidentiality vs. value of accessible databases Common approach toward rare and common diseases Skepticism of medical profession towards new genomics-based options: health care consumption

8 General remarks Prevention based on personal motivation: offering choice as a common basis for genetics, genomics and public health (Dirk Stemerding): Both public health and community genetics policy should result in arguments that make sense at an individual level High-throughput screening changes concepts of public health Underestimation of both public opinion, patient opinion and the biopharmaceutical complex as drivers of healthcare Need for more genetic thinking in education, health care and Possibilities to implement more advanced choices in informed consent and (subsequent) internet options.

9 Role of patient / consumer organizations Management of expectations (basic science vs. healthcare applications), fears, thrust, risk perception, etc. Integration of emotional & psychosocial aspects in education and care: need for human human genetics Unmet medical needs & quality of life (market pull) Ensure genomics base on public/patient needs: translation of general health concepts Influence public perception of the value of medical research: Communication of successes and health care benefits in the public domain Simulate personalized health care; no one-fits-all strategy, earlier and refined diagnosis, prescription of medicines, pharmacogenetics etc) Contribute to public awareness and perception of disease and the role of genetics/genomics therein

10 Needs of patient/consumer organizations Partnering with scientific, medical and biopharmaceutical stakeholders: early involvement, transparency & communication Active involvement of biobanking and clinical research Identification of different tensions between health care systems and potential genetics/genomics challenges in the European member states Equal levels of access to different ms. Access to, and fast implementation of, best practices Solidarity: genetics & genomics as a continuum Permanent European structures for integration, stimulation and support of national genetic education and support centers Re-thinking of (life) assurance policy systems Bridge patient real needs and medical profession s perception of that needs More balanced involvement of medical profession in health policy (compared to ethicists and lawyers)