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Country of newspaperCanada USA UK Australia NewspaperThe Globe and MailNational PostToronto StarMontreal Gazette Vancouver SunThe Daily Telegraph (UK)Financial Times The Guardian The Times (London) The New York Times USA TodayThe Wall Street JournalThe Washington PostSydney Morning HeraldThe AgeThe AustralianWord countYear of publicationSection of newspaper (exclude articles marked as “online only”)News Health/lifestyle/living Science Other Not specified Article typeNews article Investigation or news analysis Editorial/opinion piece Letter to the editor OtherAuthor of articleReporter (health/science) Reporter (other than health/science) Expert commentary Mixed/multiple authors Not specified Other (including letters to editor) Is a specific biobank mentioned?No Yes If so, what biobank is mentioned? (free code)Not applicable CARTaGene Swedish Twin Registry UK BioBank Victorian Cancer Biobank Childhood Cancer and Blood Research (CCBR) BioBankSwedish National Biobank ProgramCanadian Prostate Cancer Network (CPC GENE) BioBankNewborn Screening Biobank (Denmark)The National Cohort (German)Children’s Hospital Boston BiobankDeCODEDenmark’s BiobankKaiser Permanente's Biobank King’s College London Brain BankUK Brain Bank for AutismPersonal Genome ProjectCell CareDonor Tissue Bank of Victoria Harvard Brain Tissue Resource CenterUK Stem Cell BankMilitary Brain Injury Studies ProgramAustralian Breast Cancer Tissue BankMelanoma Institute’s Tissue BankCentre for the Study of Traumatic Encephalopathy at Boston University (“NFL’s brain bank”) Breast Cancer Campaign’s BiobankQuebec Brain BankVanderbilt Medical Center Gene BankStem Cell Bank at the Bernard O'Brien Institute of MicrosurgeryParkinson’s Disease Society Tissue BankCanadian Sports Concussion ProjectMultiple (West London Mental Health NHS Trust Brain Bank; University of California Brain Observatory, Biobank Japan, Estonian Genome Project, Western Australia Genome Health Project, Singapore Tissue Network, UK Biobank (x2), CARTaGENE, BC Biolibrary, Breakthrough Generations project)Genetic Alliance BiobankSeraCare BiobankGRAD BiobankCollaGenesis BiobankSydney Cord Blood BankMS Brain BankComprehensive Human Tissue NetworkTumor Tissue Repository StemLifeLine Tissue BankAlberta Cord Blood BankVirgin Health Bank LifeBankUSAStem Cell Resource Cryos International Sperm BankBaker Heart Research Institute Gene BankWhere is the biobank mentioned in the article located? Not applicable Canada USA UK Australia Other (specify; add separate code if 5 or more occurrences) What, if any, is the primary biological material represented in the article?Blood Tissue Stem cells TumorsDNA SpermMultiple (specify) (up to 3) Unspecified UrineSaliva Bone marrowAmniotic FluidEmbryosCheek SwabIf mentioned, is the funding source for the biobank represented as public or private?Public Private Joint Unspecified If a specific source of funding is mentioned in the article, what is it? (develop code)No source mentioned Multiple (specify) (up to 3) CN Miracle MatchLawrence Zimmering (charitable fundraising)US Government Asterand (a company)UK Department of HealthPROCURE Foundation (non-profit)Wellcome Trust Kaiser Permanente Medical Research Council Multiple Myeloma Research ConsortiumPrivate Volunteers Cell careAustralian Government“Open source” (anyone able to purchase)US PentagonNational Health and Medical Research Council [Australia]The National Football LeagueThe Fonds de recherche en santé du QuebecParkinson’s Disease SocietyGovernment of SwedenInternational Science FoundationsUK GovernmentCharitable fundingProstate Cancer CanadaOntario Institute for Cancer ResearchMovemberHelmholtz Association (Germany’s largest research organization)German federal governmentGerman state governmentsChildren’s Hospital BostonDonationsGenome CanadaGenome QuebecBreast cancer campaignAsda’s Tickled PinkWalk the Walk CampaignCentre for the Study of Traumatic Encephalopathy at BostonSports Legacy Institute (a non-profit)Multiple (UK Department of Health, the Scottish Executive, the Northwest, federal government, Quebec government, international partnersPioneer FundCIHRDepartment of Health Carnegie Fund IIBioLevierNational Health ServiceMS Research AustraliaNational Institutes of HealthBC Cancer AgencyAstraZenecaGlaxo SmithKlineVirgin GroupCity of LondonDoes the article feature a patient/donor story?No Yes What is (are) the condition(s)/disease(s) represented in the article? (develop code)No specific condition mentioned Mixed (specify as words) Cancer Schizophrenia Autism DementiaDiabetesNeurological diseaseAlzheimer’s StrokeChronic Traumatic Encephalopathy (CTE)Staph infections (looking for genetic susceptibility to staph)Brain injuryParkinson’sMultiple SclerosisProgeriaALSChronic fatigue syndromeWere any of the following quoted in the discussion of biobanking? 1 = no, 2 = yes Patient/donor Researcher Clinician Public/government official Biobank staff Funding official Private industry Are benefits of biobanking mentioned in the article?No Yes If so, how is the benefit framed? (Choose only the dominant frame.)Clinical (immediate health benefits) Research and development Economic Progress and prestige Other (specify)Not applicable What is the main benefit discussed, if any?Not applicable Medical research Contributes to Innovation Useful for developing personalized medicineUseful clinical information for donor/patientFinancial pay-offs/good financial investmentForefront of medical research and health careContributes to economic growthUsed in treatment/used in clinical trialsDeveloping drugs and therapies Study of Disease Prevention/diagnosis/treatment of diseaseScreening for diseasePrestige Better outcomes for transplantationTissue donationCuring/eliminating diseaseSource for rare tissueTherapeutic transplantationEthical source for stem cellsPublic source for stem cellsDoes the article mention or discuss the following specific benefit or risk? (1 for no, 2 for yes):a. Health benefits for research participants or donor, including diagnostic or screening benefits b. Discrimination in health insurance c. Discrimination in other contexts Are risks or concerns regarding biobanking mentioned in the article?No Yes If so, now are the risks or concerns framed?Clinical Ethical Economic Research Other (specify)Not applicable What is the main risk or concern discussed, if any? (develop code)Not applicable Privacy Exploitation Not useful/ not effective/ won’t provide useful information Research without informed consentBankruptcy (not economically viable)Discrimination in employmentLack of governance/standards/oversightGenetic discriminationUncertainty about remit/applicationPatenting genes by companiesExpensiveSafety of product, need for safety testingEthical issues associated with embryonic stem cellsLack of clear scientific rationale Ownership of tissue/research resultsLack of research utility Lack of clinical utilityCost/funding Consent Diverts funding from other researchRacial discrimination Sourcing of stem cells (abortion, etc.)Increases complexity of medical treatment Commodification Lack of control over what research is done with donated materialHow is biobanking portrayed in the article as a whole?Neutrally Positively Negatively If positive, why?Clinical Research and development Economic Progress and prestige Other (specify)Not applicable If negative, why?Clinical Ethical EconomicResearch Other (specify)Not applicable Are legal, policy, or regulatory issues relating to biobanking mentioned?No Yes ................
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