Results for 'Biosamples'

13 found
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  1.  10
    Obstacles to Widening Biosample Research.Flora Colledge, Jakob Passweg & Bernice Elger - 2019 - Science and Engineering Ethics 25 (1):113-128.
    Switzerland has an excellent culture of medical research and is a melting pot for medical experts with international expertise. Nevertheless, as in other countries, the resources available to medical researchers are not being fully used. Biological samples, which enable a host of medical research studies to be carried out without invasive methods involving patients, are frequently left unused or forgotten. The aim of this study is to examine the experiences of biobank stakeholders regarding the use or underuse of biosamples, (...)
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  2. Following the giant’s paces: Governance issues and bioethical reflections in China.Zhaochen Wang, Zhang Di, Vincent H. Ng, Reidar Lie & Xiaomei Zhai - 2014 - BMC Medical Ethics 15 (1):1-9.
    China has become a global player in the field of biosamples research and analysis of genetic data. The Beijing Genomics Institute is a genetics factory where enormous amounts of biosamples/data from all over the world are being analyzed. Most of the global bioethics discussions focused on research conducted by scientists from industrialized countries with subjects from poorer countries. Today, however, samples from industrialized nations are being analyzed in China on an unprecedented scale. This means that one should not (...)
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  3.  29
    Informed Consent, Body Property, and Self-Sovereignty.Radhika Rao - 2016 - Journal of Law, Medicine and Ethics 44 (3):437-444.
    Recent cases involving biosamples taken from indigenous tribes and newborn babies reveal the emptiness of informed consent. This venerable doctrine often functions as a charade, a collective fiction which thinly masks the uncomfortable fact that the subjects of human research are not actually afforded full information regarding the types of research that may be contemplated, nor do they provide meaningful consent. But if informed consent fails to provide adequate protection to the donors of biological materials, why not turn to (...)
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  4.  38
    “It’s all about trust”: reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.Keymanthri Moodley & Shenuka Singh - 2016 - BMC Medical Ethics 17 (1):57.
    Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers (...)
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  5.  22
    National Biobanks: Clinical Labor, Risk Production, and the Creation of Biovalue.Catherine Waldby & Robert Mitchell - 2010 - Science, Technology, and Human Values 35 (3):330-355.
    The development of genomics has dramatically expanded the scope of genetic research, and collections of genetic biosamples have proliferated in countries with active genomics research programs. In this essay, we consider a particular kind of collection, national biobanks. National biobanks are often presented by advocates as an economic ‘‘resource’’ that will be used by both basic researchers and academic biologists, as well as by pharmaceutical diagnostic and clinical genomics companies. Although national biobanks have been the subject of intense interest (...)
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  6.  13
    Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.Keymanthri Moodley & Shenuka Singh - 2021 - BMC Medical Ethics 22 (1):1-13.
    BackgroundBiobanking provides exciting opportunities for research on stored biospecimens. However, these opportunities to advance medical science are fraught with challenges including ethical and legal dilemmas. This study was undertaken to establish perspectives of South African stakeholders on the ethico-legal dimensions of biobanking.MethodsAn in-depth exploratory study was conducted with 25 purposively selected biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee (REC) members in South Africa. Potential study participants were recruited through known hubs for biobanking in the country, (...)
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  7.  22
    Mathematics and Measurements for High-throughput Quantitative Biology.Harald Martens & Achim Kohler - 2009 - Biological Theory 4 (1):29-43.
    Bioscientists generate far more data than their minds can handle, and this trend is likely to continue. With the aid of a small set of versatile tools for mathematical modeling and statistical assessment, bioscientists can explore their real-world systems without experiencing data overflow. This article outlines an approach for combining modern high-throughput, low-cost, but non-selective biospectroscopy measurements with soft, multivariate biochemometrics data modeling to overview complex systems, test hypotheses, and making new discoveries. From preliminary, broad hypotheses and goals, many relevant (...)
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  8.  18
    Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.Gloria M. Petersen & Brian Van Ness - 2015 - Journal of Law, Medicine and Ethics 43 (3):523-528.
    Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.
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  9.  17
    Consent requirements for research with human tissue: Swiss ethics committee members disagree.Flora Colledge, Sophie De Massougnes & Bernice Elger - 2018 - BMC Medical Ethics 19 (1):93.
    In Switzerland, research with identifiable human tissue samples, and/or its accompanying data, must be approved by a research ethics committee before it can be allowed to take place. However, as the demand for such tissue has rapidly increased in recent years, and biobanks have been created to meet these needs, committees have had to deal with a growing number of such demands. Detailed instructions for evaluating every kind of tissue request are scarce. Committees charged with evaluating research protocols therefore sometimes (...)
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  10.  41
    Getting a Fair Share: Attitudes and Perceptions of Biobank Stakeholders Concerning the Fairness of Sample Sharing.Flora Colledge & Bernice Elger - 2014 - Bioethics 29 (6):424-430.
    Biobanks are essential tools for furthering a broad range of medical research areas. However, despite the plethora of national and international laws and guidelines which apply to them, the access and sharing policies of biobanks are only sparsely addressed by regulatory bodies. The ‘give and take’ process of biosample sharing is largely left up to biobank stakeholders themselves to oversee; it is therefore both in stakeholders' power, and in their interest, to ensure that sample accessibility is fair. This is an (...)
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  11. “Conferring Authorship”: Biobank stakeholders’ experiences with publication credit in collaborative research.Flora Colledge, Bernice Elger & David Shaw - 2013 - PLoS ONE 8:e76686.
    Background: Multi-collaborator research is increasingly becoming the norm in the field of biomedicine. With this trend comes the imperative to award recognition to all those who contribute to a study; however, there is a gap in the current “gold standard” in authorship guidelines with regards to the efforts of those who provide high quality biosamples and data, yet do not play a role in the intellectual development of the final publication. -/- Methods and findings: We carried out interviews with (...)
     
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  12.  25
    Genetic research and consent: On the crossroads of human and data research.Kärt Pormeister - 2018 - Bioethics 33 (3):347-356.
    This paper explores the legal and ethical concept of human subject research in order to determine whether genetic research with already available biosamples and data falls within this concept. Although the ethical concept seems to have evolved to recognize research based on data as human research, from a supranational legal perspective this form of research is not considered human subject research. Thus human subject research regulations do not apply and therefore do not invoke the requirement of obtaining consent prior (...)
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  13.  34
    Mention of ethical review and informed consent in the reports of research undertaken during the armed conflict in Darfur : a systematic review. [REVIEW]Ghaiath Hussein & Khalifa Elmusharaf - 2019 - BMC Medical Ethics 20 (1):40.
    Armed conflict in Darfur, west Sudan since 2003 has led to the influx of about 100 international humanitarian UN and non-governmental organizations to help the affected population. Many of their humanitarian interventions included the collection of human personal data and/or biosamples, and these activities are often associated with ethical issues. A systematic review was conducted to assess the proportion of publicly available online reports of the research activities undertaken on humans in Darfur between 2004 and 2012 that mention obtaining (...)
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