Manual Principles and Practice in Biobank Governance

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Backstories: Biobank

They can be used to discover particular variations of diseases or novel therapeutic targets, and thus accelerate drug discovery in the scope of personalized medicine. However, human biobank development also presents a number of legal and ethical challenges, as well as key governance issues that ought to be resolved, in order to achieve a satisfying level of political, financial and public acceptance. Aspects of patient education and the role of primary health practitioners in fasciliatating the process are also contemplated.

Public contributions to medical research are necessary for the advancement of science. Several ethical and legal issues remain to be resolved, as regards the collection of biological material.

Biobank Governance, Privacy, and Informed Consent

Primary health practitioners have an important role to play in the process of informing patients, as regards personal rights and benefits, as well as the long-term potential of biobanking for both science and community. Public awareness and acceptance of biobanks is required for the success of biomedical research. Initiatives like the BBRMI project provide organizational support that guarantee quality management of biospecimens and protection of privacy rights. These new technologies are expected to boost biomedical research and improve healthcare in the near future.

Biobanking has been characterized as one of the top ten ideas changing the world right now, due to its potential of leading to personalized medicine. The samples collected in biobanks may be derived from the general population or from a particular subset of the population, such as patients burdened with certain pathologies. A successful example of a population-based biobank is the UK National Biobank, which has collected biological specimens and associated data from over , participants.

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Progress in medicine depends on innovation and application of laboratory findings to clinical practice. In order to transpose from laboratory discovery to medical application, research researchers depend on access to human biological samples. Studies on diseases are often limited by the difficulty in recruiting sufficient numbers of cases within one collection site. This is particularly true for rare diseases, where efficient therapies are scarce and limmited to only but a few exceptional conditions.

Networking between biobanks offers the potential of flow of information, knowledge and biological materials across different centers, provided that all contributing parties adopt common practices for the collection, storing and labeling of samples, as well as for data management and manipulation. This network will bring together European Biobanks, Molecular Research Laboratories and Bioinformatics Centers and will help connect information in accompanying samples and clinical databases.

BBMRI aims to harmonize standards concerning the collection, storage and analysis of samples, synchronize data collection and related infrastructure for databases, provide moral and legal guidance and create a sustainable financing environment for biobanks.

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An interactive list of associated biobanks was created during the preparatory phase of BBMRI, which included centers from 21 European countries and provided more than 16 million samples for research purposes in the international community. Projects like this are no doubt a gigantic leap into the face of translational medicine, enabling coherence and diversity across many disciplines, and the incorporation of various ethnic and genetic backgrounds.

Management of private genetic information however, raises the need of strict regulative and organizational control. This reflects upon governance issues that take into consideration all legal, ethical and social constrains. Governance is broadly defined as the management of inter-dependencies. This refers to the organization spectrum under which a large set of interacting components meet, including decision-makers, institutions and policies, procedures and practicioners. In this scope, significant challenges are presented.

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  • A legal framework applicable for all biobanks is currently missing and biobanks need to conform to national laws that are not always clear. Approval by ethic committees is an indispensable provision for biobank establishment.

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    However, the fact that licensing bodies only have limited authority confined to their jurisdiction, may stand as an obstacle to international collaboration. National authorities are encouraged to collaborate in this direction, in order to avoid unnecessary multiplication of compliance requirements. Science and community have to cooperate on this matter.

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    Longitudinal clinical data collection is often necessary for successful implementation of research projects. For this reason biobanks must be supported professionally, in a multi-disciplinary fashion including doctors, nurses, laboratory technicians, information technology experts, social scientists and psychologists. Custodians have the responsibility for operations, compliance with best practices and regulations, as well as receiving, processing and responding to requests concerning access to stored samples.

    Successful management ensures longterm establishment of public trust. It is generally thought that people are more likely to donate samples in a biobank if it is publically funded. Biobank researchers continuously face the following dilemma: on one hand the demand of the society for better, more effective treatment options, and on the other concerns about privacy.

    Biobank Governance, Privacy, and Informed Consent | University of Toronto Faculty of Law

    Biobank research involves risks concerning personal information related or derived from donated samples that may be misused and thus undermine privacy, autonomy, personal integrity and confidentiality of research subjects. When human biological materials are collected, it is obligatory to ask individuals to give their informed consent.

    Any inconvenience, psychological distress, return of information and postmortem research issues must be clearly demonstrated in the consenting process, along with full privacy and confidentiality issues and options for withdraw. Townend, D. In: Kaye, Jane and Stranger, Mark , eds.

    Principles and practice in biobank governance.

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    Farnham: Ashgate, pp. ISBN Request Changes to record. Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them.

    Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, "Principles and Practice in Biobank Governance" draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume.

    This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.