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Citizen engagement initiative materials

Organisation Initiative Link to the general initiative Material Description Link
ABC Radio Health report https://www.abc.net.au/listen/programs/healthreport Podcast Podcast on life insurers being banned from using genetic data EN: https://www.abc.net.au/listen/programs/healthreport/genetic-testing-life-insurance/104378404
Podcast Podcast on what AI scribes can (and can't) do for healthcare EN: https://www.abc.net.au/listen/programs/healthreport/ai-in-healthcare-scribes/105568802
CCNE États généraux de la bioéthique https://www.ccne-ethique.fr/publications/rapports-de-synthese-des-etats-generaux-de-la-bioethique Report French citizens’ opinions on several bioethical topics, incl. genomic medicine FR: https://www.ccne-ethique.fr/sites/default/files/2022-05/Rapport%20de%20synth%C3%A8se%20CCNE%20AG2022%20aout.pdf
De Maakbare Mens Overal Lespakket Genetica https://www.demaakbaremens.org/themas/erfelijkheid/ Teaching material Educational material to launch the ethical and societal debate in secondary school classrooms NL: https://www.demaakbaremens.org/themas/erfelijkheid/overal-dna-voor-leerkrachten/
Eurordis Screen4Care https://www.screen4care.eu/people-living-with-rare-diseases/involvement Report Survey’s results about European rare disease patients’ opinion on newborn screening EN: https://www.eurordis.org/publications/voices-on-newborn-screening-the-report/
Genome Quebec Genome Quebec https://genomequebec.com/en/ Website Interactive educational website on genomics FR/EN: https://genomequebec.com/en/educative-content/educational-space/
Genomics England Public dialogue on whole-genome sequencing for newborns https://www.genomicsengland.co.uk/initiatives/newborns/engagement Report UK citizens’ opinions on whole genome sequencing for newborn screening EN: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/959931/WGS_for_newborn_screening_FINAL_ACCESSIBLE.pdf
Genomics England A new public dialogue on genomic medicine: Time for a new social contract? https://www.genomicsengland.co.uk/news/public-dialogue-report-published Report UK citizens’ opinions on genomic medicine EN: [replace with the exact PDF link from your doc]
Genomics England A Qualitative Exploration: Views of Black African and Black Caribbean Communities on the 100,000 Genomes Project https://www.genomicsengland.co.uk/ Report Opinions of Black African and Black Caribbean communities on the 100,000 Genomes Project EN: [replace with the exact PDF link from your doc]
Health Research Authority (HRA) and Human Tissue Authority (HTA) Public dialogue on consent to human tissue and linked health data in research https://sciencewise.org.uk/ (project page) Report UK citizens’ opinions on consent procedures in human tissue research and related health data EN: [replace with the exact PDF link from your doc]
Sciensano Citizen forum https://www.sciensano.be/en/projects/citizens-forum-user-centric-information-healthcare Report Belgian citizens’ ethical recommendations on genomic information usage FR: [replace with FR PDF link]
NL: [replace with NL PDF link]
Sciensano DNA Debate https://www.sciensano.be/en/projects/dna-debate Booklet Nine case studies raising ethical and societal issues in genomic information usage FR: [replace with the exact booklet PDF link]
Sciensano Teaching material Pedagogical exercises to launch the ethical and societal debate in secondary school classrooms NL: [replace with NL PDF link]
FR: [replace with FR PDF link]
UNC Chapel Hill The Age-Based Genomic Screening https://www.med.unc.edu/genetics/abgs Website Educational modules on genomics EN: https://www.med.unc.edu/genetics/abgs/parent-community-engagement/
Wellcome Connecting Science Your DNA, your say https://www.wellcomeconnectingscience.org/project/your-dna-your-say/ Videos Educational videos on genetics EN: https://vimeo.com/showcase/4657358
Twi (Ghana): [replace with YouTube playlist link]
Interactive website Educational teaching materials on genomics EN: https://www.yourgenome.org/