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  1. DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW]Timothy Caulfield, Ross Upshur & Abdallah Daar - 2003 - BMC Medical Ethics 4 (1):1-4.
    Background Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. Discussion In this paper, we discuss the (...)
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  • The Birth of Bioethics.Albert R. Jonsen - 2003 - Oxford University Press.
    Bioethics represents a dramatic revision of the centuries-old professional ethics that governed the behavior of physicians and their relationships with patients. This venerable ethics code was challenged in the years after World War II by the remarkable advances in the biomedical sciences and medicine that raised questions about the definition of death, the use of life-support systems, organ transplantation, and reproductive interventions. In response, philosophers and theologians, lawyers and social scientists joined together with physicians and scientists to rethink and revise (...)
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  • Empirical Research in Medical Ethics: How Conceptual Accounts on Normative-Empirical Collaboration May Improve Research Practice.Sabine Salloch, Jan Schildmann & Jochen Vollmann - 2012 - BMC Medical Ethics 13 (1):5.
    BackgroundThe methodology of medical ethics during the last few decades has shifted from a predominant use of normative-philosophical analyses to an increasing involvement of empirical methods. The articles which have been published in the course of this so-called 'empirical turn' can be divided into conceptual accounts of empirical-normative collaboration and studies which use socio-empirical methods to investigate ethically relevant issues in concrete social contexts.DiscussionA considered reference to normative research questions can be expected from good quality empirical research in medical ethics. (...)
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  • Seeking Consent to Genetic and Genomic Research in a Rural Ghanaian Setting: A Qualitative Study of the MalariaGEN Experience. [REVIEW]Paulina Tindana, Susan Bull, Lucas Amenga-Etego, Jantina de Vries, Raymond Aborigo, Kwadwo Koram, Dominic Kwiatkowski & Michael Parker - 2012 - BMC Medical Ethics 13 (1):15-.
    Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...)
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  • Ethics by Opinion Poll?: The Functions of Attitudes Research for Normative Deliberations in Medical Ethics.Sabine Salloch, Jochen Vollmann & Jan Schildmann - 2014 - Journal of Medical Ethics 40 (9):597-602.
    Empirical studies on people's moral attitudes regarding ethically challenging topics contribute greatly to research in medical ethics. However, it is not always clear in which ways this research adds to medical ethics as a normative discipline. In this article, we aim to provide a systematic account of the different ways in which attitudinal research can be used for normative reflection. In the first part, we discuss whether ethical judgements can be based on empirical work alone and we develop a sceptical (...)
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  • Human Genetic Research: Emerging Trends in Ethics.Ruth Chadwick & Bartha Maria Knoppers - 2005 - .
    Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.
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  • The Informed Consent Process in a Rural African Setting: A Case Study of the Kassena-Nankana District of Northern Ghana.N. Kass & P. Akweongo - 2005 - IRB: Ethics & Human Research 28 (3):1-6.
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  • Solidaroty and Equity : New Ethical Frameworks for Genetic Databases.Ruth Chadwick & Kåre Berg - 2001 - .
    Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.
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  • Informed Consent: Its History, Meaning, and Present Challenges.Tom L. Beauchamp - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (4):515-523.
    The practice of obtaining informed consent has its history in, and gains its meaning from, medicine and biomedical research. Discussions of disclosure and justified nondisclosure have played a significant role throughout the history of medical ethics, but the term “informed consent” emerged only in the 1950s. Serious discussion of the meaning and ethics of informed consent began in medicine, research, law, and philosophy only around 1972.
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  • Solidarity and Justice as Guiding Principles in Genomic Research.Rogeer Hoedemaekers, Bert Gordijn & Martien Pijnenburg - 2007 - Bioethics 21 (6):342–350.
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  • Reichsrundschreiben 1931: Pre-Nuremberg German Regulations Concerning New Therapy and Human Experimentation.Hans-Martin Sass - 1983 - Journal of Medicine and Philosophy 8 (2):99-112.
    This is the first re-publication and first English translation of regulations concerning Human Experimentation which were binding law prior to and during the Third Reich, 1931 to 1945. The introduction briefly describes the duties of the Reichsgesundheitsamt, which formulated these regulations. It then outlines the basic concept of the Richtlinien for protecting subjects and patients on the one hand and for encouraging New Therapy and Human Experimentation on the other hand. Major issues, like personal responsibility of the physician or researcher, (...)
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  • An Effective Multisource Informed Consent Procedure for Research and Clinical Practice: An Observational Study of Patient Understanding and Awareness of Their Roles as Research Stakeholders in a Cancer Biobank. [REVIEW]Silvia Cervo, Jane Rovina, Renato Talamini, Tiziana Perin, Vincenzo Canzonieri, Paolo De Paoli & Agostino Steffan - 2013 - BMC Medical Ethics 14 (1):30.
    Efforts to improve patients’ understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients.
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  • Trusted Consent and Research Biobanks: Towards a 'New Alliance' Between Researchers and Donors.Giovanni Boniolo, Pier Paolo di Fiore & Salvatore Pece - 2012 - Bioethics 26 (2):93-100.
    We argue that, in the case of research biobanks, there is a need to replace the currently used informed consent with trusted consent. Accordingly, we introduce a proposal for the structure of the latter. Further, we discuss some of the issues that can be addressed effectively through our proposal. In particular, we illustrate: i) which research should be authorized by donors; ii) how to regulate access to information; iii) the fundamental role played by a Third Party Authority in assuring compliance (...)
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  • Can Broad Consent Be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
    In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...)
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  • A Trust‐Based Pact in Research Biobanks. From Theory to Practice.Virginia Sanchini, Giuseppina Bonizzi, Davide Disalvatore, Massimo Monturano, Salvatore Pece, Giuseppe Viale, Pier Paolo Di Fiore & Giovanni Boniolo - 2016 - Bioethics 30 (4):260-271.
    Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as (...)
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