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Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the  borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks.Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in the Western world and some critical chapters to show how regulations and ethical frameworks are developed and work. How should international sharing work? How design an ethical informed consent? An underlying critique: the regulatory systems are becoming increasingly complex and opaque. The international community is building systems that should respond to that. According to the authors in fact, it is time to turn the ship around. Biobank researchers have a moral responsibility to look at and assess their work in relation to the bigger picture: the shared norms and values of current society. Research ethics shouldn’t only be a matter of bioethicists writing guidelines that professionals have to follow. Ethics should be practiced through discourse and regulatory frameworks need to be part of that public discourse. Ethics review should be then not merely application of bureaucracy and a burden for researchers but an arena where researchers discuss their projects, receive advice and practice their ethics skills.

Medicine & Public Health. --- Theory of Medicine/Bioethics. --- Civil Law. --- Ethics. --- Medicine. --- Medical ethics. --- Civil law. --- Médecine --- Morale --- Ethique médicale --- Droit civil --- Public Policy --- Biomedical Research --- Confidentiality --- Genetics --- Privacy --- Health Facilities --- Social Sciences --- Research --- Health Care Facilities, Manpower, and Services --- Patient Rights --- Biology --- Social Control Policies --- Civil Rights --- Jurisprudence --- Anthropology, Education, Sociology and Social Phenomena --- Social Control, Formal --- Human Rights --- Science --- Policy --- Biological Science Disciplines --- Health Care --- Natural Science Disciplines --- Health Care Economics and Organizations --- Sociology --- Disciplines and Occupations --- Internationality --- Health Policy --- Genetic Privacy --- Biological Specimen Banks --- Genetic Research --- Medicine --- Health & Biological Sciences --- Medical Ethics & Philosophy --- Biology - General --- Biobanks --- Biological specimens --- Law and legislation. --- Moral and ethical aspects. --- Bio-banks --- Biological specimen banks --- Biological resource centers --- Medical laws and legislation --- Deontology --- Ethics, Primitive --- Ethology --- Moral philosophy --- Morality --- Morals --- Philosophy, Moral --- Science, Moral --- Philosophy --- Values --- Law, Civil --- Private law --- Roman law --- Biomedical ethics --- Clinical ethics --- Ethics, Medical --- Health care ethics --- Medical care --- Bioethics --- Professional ethics --- Nursing ethics --- Social medicine --- Moral and ethical aspects

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Genetics --- Genetics, Medical --- Genetic Predisposition to Disease --- Genetic Screening --- Genome --- Medical genetics --- Genomics --- Génétique médicale --- Génomique --- Periodicals. --- Périodiques --- Genomes --- Human genome --- Genetics, Medical. --- Genome. --- Genetic Testing. --- Genetic Predisposition to Disease. --- Genomes. --- Human genome. --- Medical genetics. --- Chemistry --- Health Sciences --- Life Sciences --- Biochemistry --- Pathology --- Predisposition, Genetic --- Susceptibility, Genetic --- Genetic Predisposition --- Genetic Susceptibility --- Genetic Predispositions --- Genetic Susceptibilities --- Predispositions, Genetic --- Susceptibilities, Genetic --- Disease Susceptibility --- Predictive Genetic Testing --- Predictive Testing, Genetic --- Testing, Genetic Predisposition --- Genetic Predisposition Testing --- Genetic Predictive Testing --- Genetic Screenings --- Genetic Testing, Predictive --- Predisposition Testing, Genetic --- Screening, Genetic --- Screenings, Genetic --- Testing, Genetic --- Testing, Genetic Predictive --- Testing, Predictive Genetic --- Human Genetics --- Medical Genetics --- Genetics, Human --- genetics --- diagnosis --- Genetic Testing --- Anticipation, Genetic --- Genetic Association Studies --- Gene-Environment Interaction --- Prenatal Diagnosis --- Preimplantation Diagnosis --- Cytogenetic Analysis --- Molecular Diagnostic Techniques --- Databases, Genetic --- Databases, Nucleic Acid --- Genetic Privacy --- Genes --- Proteome --- Anthropology, Physical --- Chromosome Disorders --- Sex Chromosome Disorders --- Genetic Diseases, Inborn --- Molecular Medicine --- Human chromosomes --- Haploidy --- Clinical genetics --- Diseases --- Heredity of disease --- Human genetics --- Medical sciences --- Genetic disorders --- Genetic aspects --- Génétique médicale --- Génomique

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Bioethics -- Congresses. --- Demography -- Congresses. --- Medical ethics -- Congresses. --- Medical genetics -- Congresses. --- Social medicine -- Congresses. --- Social medicine --- Medical ethics --- Bioethics --- Demography --- Medical genetics --- Growth and Development --- Behavioral Sciences --- Medicine --- Health Surveys --- Jurisprudence --- Epidemiologic Methods --- Public Health Practice --- Methods --- Epidemiologic Measurements --- Anthropology, Education, Sociology and Social Phenomena --- Civil Rights --- Patient Rights --- Morals --- Forensic Psychiatry --- Public Health --- Population Characteristics --- Health Care Evaluation Mechanisms --- Health Care Quality, Access, and Evaluation --- Philosophy --- Legislation as Topic --- Humanities --- Biology --- Science --- Information Science --- Physiological Processes --- Health Occupations --- Human Rights --- Psychology, Social --- Social Control, Formal --- Quality of Health Care --- Health Care --- Investigative Techniques --- Behavioral Disciplines and Activities --- Psychiatry --- Natural Science Disciplines --- Biological Science Disciplines --- Psychiatry and Psychology --- Sociology --- Health Care Economics and Organizations --- Behavior and Behavior Mechanisms --- Physiological Phenomena --- Environment and Public Health --- Disciplines and Occupations --- Analytical, Diagnostic and Therapeutic Techniques and Equipment --- Phenomena and Processes --- Aging --- Research Design --- Social Sciences --- Genetic Privacy --- Informed Consent --- Data Collection --- Genetics, Medical --- Population Surveillance --- Privacy --- Epidemiology --- Ethics --- Behavioral Research --- Confidentiality --- Genetics --- Research --- Social Medicine --- Health & Biological Sciences

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Genetic tests are being developed at an impressive rate and a significant number has already reached the market. Substantial involvement of the private sector has led to unprecedented growth in commercial genetic testing services and in trade of such services. This trend is expected to increase as knowledge gained from the mapping of the human genome and of single nucleotide polymorphisms (SNPs) is applied to the identification of disease-causing genes and of inherited differences in drug response. The potential socio-economic and ethical impacts are staggering. This report provides a state-of-the art review of advances in genetic testing and of main international policy concerns drawing from the OECD workshop on "Genetic Testing: Policy Issues for the New Millennium", held in Vienna on 23-25 February 2000.

Human chromosome abnormalities -- Diagnosis -- Congresses. --- Human chromosome abnormalities -- Diagnosis -- Social aspects -- Congresses. --- Human chromosome abnormalities. --- Human chromosome abnormalities --- Public Policy --- Genetic Techniques --- Diagnostic Techniques and Procedures --- Genetic Services --- Diagnostic Services --- Health Services --- Social Control Policies --- Preventive Health Services --- Diagnosis --- Investigative Techniques --- Analytical, Diagnostic and Therapeutic Techniques and Equipment --- Health Care Facilities, Manpower, and Services --- Social Control, Formal --- Policy --- Community Health Services --- Social Sciences --- Health Care Economics and Organizations --- Health Care --- Sociology --- Anthropology, Education, Sociology and Social Phenomena --- Genetic Testing --- Health Policy --- Medicine --- Health & Biological Sciences --- Pathology --- Genetic Screening --- Predictive Genetic Testing --- Predictive Testing, Genetic --- Testing, Genetic Predisposition --- Genetic Predisposition Testing --- Genetic Predictive Testing --- Genetic Screenings --- Genetic Testing, Predictive --- Predisposition Testing, Genetic --- Screening, Genetic --- Screenings, Genetic --- Testing, Genetic --- Testing, Genetic Predictive --- Testing, Predictive Genetic --- Genetic Predisposition to Disease --- National Health Policy --- Health Policies --- Health Policies, National --- Health Policy, National --- National Health Policies --- Policies, Health --- Policies, National Health --- Policy, Health --- Policy, National Health --- General Social Development and Population --- Community-Based Distribution --- Contraceptive Distribution --- Delivery of Healthcare --- Dental Care Delivery --- Distribution, Non-Clinical --- Distribution, Nonclinical --- Distributional Activities --- Healthcare --- Healthcare Delivery --- Healthcare Systems --- Non-Clinical Distribution --- Nonclinical Distribution --- Delivery of Dental Care --- Health Care Delivery --- Health Care Systems --- Activities, Distributional --- Activity, Distributional --- Care, Health --- Community Based Distribution --- Community-Based Distributions --- Contraceptive Distributions --- Deliveries, Healthcare --- Delivery, Dental Care --- Delivery, Health Care --- Delivery, Healthcare --- Distribution, Community-Based --- Distribution, Contraceptive --- Distribution, Non Clinical --- Distributional Activity --- Distributions, Community-Based --- Distributions, Contraceptive --- Distributions, Non-Clinical --- Distributions, Nonclinical --- Health Care System --- Healthcare Deliveries --- Healthcare System --- Non Clinical Distribution --- Non-Clinical Distributions --- Nonclinical Distributions --- System, Health Care --- System, Healthcare --- Systems, Health Care --- Systems, Healthcare --- Healthcare Economics and Organizations --- Science, Social --- Sciences, Social --- Social Science --- Community Healthcare --- Health Services, Community --- Services, Community Health --- Community Health Care --- Care, Community Health --- Community Health Service --- Community Healthcares --- Health Care, Community --- Health Service, Community --- Healthcare, Community --- Healthcares, Community --- Service, Community Health --- Policies --- Regulation --- Social Control --- Control, Social --- Controls, Social --- Formal Social Control --- Formal Social Controls --- Regulations --- Social Controls --- Healthcare Facilities, Manpower, and Services --- Investigative Technics --- Investigative Technic --- Investigative Technique --- Technic, Investigative --- Technics, Investigative --- Technique, Investigative --- Techniques, Investigative --- Antemortem Diagnosis --- Diagnoses and Examinations --- Examinations and Diagnoses --- Postmortem Diagnosis --- Antemortem Diagnoses --- Diagnoses --- Diagnoses, Antemortem --- Diagnoses, Postmortem --- Diagnosis, Antemortem --- Diagnosis, Postmortem --- Postmortem Diagnoses --- Disease --- Health Services, Preventive --- Preventive Health --- Preventive Health Care --- Preventive Health Programs --- Preventive Programs --- Services, Preventive Health --- Care, Preventive Health --- Health Care, Preventive --- Health Program, Preventive --- Health Programs, Preventive --- Health Service, Preventive --- Health, Preventive --- Preventive Health Program --- Preventive Health Service --- Preventive Program --- Program, Preventive --- Program, Preventive Health --- Programs, Preventive --- Programs, Preventive Health --- Service, Preventive Health --- Control Policies, Social --- Control Policy, Social --- Policies, Social Control --- Policy, Social Control --- Social Control Policy --- Services, Health --- Health Service --- Service, Health --- Services, Diagnostic --- Diagnostic Service --- Service, Diagnostic --- Services, Genetic --- Genetic Service --- Service, Genetic --- Diagnostic Technics and Procedures --- Technics and Procedures, Diagnostic --- Techniques and Procedures, Diagnostic --- Genetic Technic --- Genetic Technics --- Genetic Technique --- Technic, Genetic --- Technics, Genetic --- Technique, Genetic --- Techniques, Genetic --- Genetics --- Migration Policy --- Population Policy --- Social Protection --- Social Policy --- Migration Policies --- Policies, Migration --- Policies, Population --- Policies, Public --- Policies, Social --- Policy, Migration --- Policy, Population --- Policy, Public --- Policy, Social --- Population Policies --- Protection, Social --- Public Policies --- Social Policies --- Human chromosomes --- diagnosis --- methods --- Abnormalities --- Prenatal Diagnosis --- Preimplantation Diagnosis --- Cytogenetic Analysis --- Molecular Diagnostic Techniques --- Databases, Genetic --- Databases, Nucleic Acid --- Genetic Privacy --- Policy Making --- Public Health Administration --- Social Work --- Community Health Planning --- Preventive Medicine --- Preventive Psychiatry --- Primary Prevention --- Genetic Therapy --- Sensitivity and Specificity --- Genetic Counseling --- Genetic Phenomena --- Chromosome abnormalities --- Genetic disorders --- Affirmative Action --- Action, Affirmative --- Genetic Testing. --- Health Policy. --- Europe. --- Healthcare Policy --- Healthcare Policies --- Policy, Healthcare --- Northern Europe --- Southern Europe --- Western Europe --- Genetic Tests --- Health Care Policies --- Care Policies, Health --- Health Care Policy --- Policies, Health Care --- Policies, Healthcare --- Policy, Health Care