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  1. A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research.Amnah Azahar, Aimi Nadia Mohd Yusof & Zahir Izuan Azhar - forthcoming - Asian Bioethics Review:1-14.
    Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an (...)
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  • Biobanks--When is Re-consent Necessary?K. S. Steinsbekk & B. Solberg - 2011 - Public Health Ethics 4 (3):236-250.
    The unknown nature of tomorrow’s research makes informed consent in biobank research a challenge. Whether the consent given by biobank participants is ‘broad’ or ‘narrow’, the ever present question remains the same: are new activities covered by the original consent? In this article, we focus on the meaning of, and the relation between, broad consent and re-consent in biobank research. We argue that broad consent should be understood as consenting to a framework—a framework which covers aims, core conditions for acceptable (...)
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  • Breite Einwilligung (broad consent) zur Biobank-Forschung – die ethische Debatte.Gesine Richter & Alena Buyx - 2016 - Ethik in der Medizin 28 (4):311-325.
    ZusammenfassungEthische Aspekte von Biobanken-basierter Forschung werden zunehmend kontrovers diskutiert. In diesem Artikel wird die Debatte um ethisch angemessene Formen der Einwilligung in Biobanken-basierte Forschung nachgezeichnet. Nach einer Einführung in etablierte Einwilligungsmodelle skizziert der Beitrag kurz die Entwicklung alternativer Ansätze und diskutiert die damit verbundenen ethischen und regulatorischen Herausforderungen. Dabei wird dargestellt, welche ethischen Prinzipien in diesen Diskussionen eine Rolle spielen. Der Beitrag schließt mit einem Ausblick für Deutschland.
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  • Incorporating Exclusion Clauses into Informed Consent for Biobanking.Zubin Master & David B. Resnik - 2013 - Cambridge Quarterly of Healthcare Ethics 22 (2):203-212.
  • Consenting futures: professional views on social, clinical and ethical aspects of information feedback to embryo donors in human embryonic stem cell research.Kathryn Ehrich, Clare Williams & Bobbie Farsides - 2010 - Clinical Ethics 5 (2):77-85.
    This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of (...)
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  • A Trade Secret Model for Genomic Biobanking.John M. Conley, Robert Mitchell, R. Jean Cadigan, Arlene M. Davis, Allison W. Dobson & Ryan Q. Gladden - 2012 - Journal of Law, Medicine and Ethics 40 (3):612-629.
    The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...)
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  • Informed consent in biobanking and genetic research.Antonio Casado da Rocha & Arantza Etxeberria Agiriano - 2008 - Arbor 184 (730).
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  • The human genome project.Lisa Gannett - 2009 - Stanford Encyclopedia of Philosophy.
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