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  1. Take Another Little Piece of My Heart: Regulating the Research Use of Human Biospecimens.Gail H. Javitt - 2013 - Journal of Law, Medicine and Ethics 41 (2):424-439.
    Access to human biospecimens is widely regarded as essential to the progress of medical research, and in particular, to the success of “personalized medicine.” Understanding the influence of genetic variation on human health and disease requires that researchers conduct genetic and other studies on thousands of human specimens. Over the past decade, human “biobanks” — vast collections of human biospecimens — have proliferated both in the United States and internationally. These biobanks are subject to a heterogeneous mix of standards that (...)
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  • “It’s my blood”: ethical complexities in the use, storage and export of biological samples: perspectives from South African research participants.Keymanthri Moodley, Nomathemba Sibanda, Kelsey February & Theresa Rossouw - 2014 - BMC Medical Ethics 15 (1):4.
    The use of biological samples in research raises a number of ethical issues in relation to consent, storage, export, benefit sharing and re-use of samples. Participant perspectives have been explored in North America and Europe, with only a few studies reported in Africa. The amount of research being conducted in Africa is growing exponentially with volumes of biological samples being exported from the African continent. In order to investigate the perspectives of African research participants, we conducted a study at research (...)
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  • Public Perceptions and Biobanking: What Does the Research Really Say?Christen Rachul, Amy McGuire & Timothy Caulfield - 2012 - Studies in Ethics, Law, and Technology 6 (1).
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  • «If you give them your little finger, they’ll tear off your entire arm»: losing trust in biobank research.Lars Ursin, Borgunn Ytterhus, Erik Christensen & John-Arne Skolbekken - 2020 - Medicine, Health Care and Philosophy 23 (4):565-576.
    Why do some people withdraw from biobank studies? To our knowledge, very few studies have been done on the reflections of biobank ex-participants. In this article, we report from such a study. 16 years ago, we did focus group interviews with biobank participants and ex-participants. We found that the two groups interestingly shared worries concerning the risks involved in possible novel uses of their biobank material, even though they drew opposite conclusions from their worries. Revisiting these interviews today reveals a (...)
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  • Four Themes in Recent Swedish Bioethics Debates.Gert Helgesson & Stefan Eriksson - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (3):409-417.
    A wide variety of bioethical themes have recently been debated and researched in Sweden, including genetic screening, HPV vaccination strategies, end-of-life care, injustices and priority setting in healthcare, dual-use research, and the never-ending story of scientific fraud. Also, there are some new events related to Swedish biobanking that might be of general interest. Here we will concentrate on four themes: end-of-life care, dual-use research, scientific fraud, and biobanking.
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  • Limits of data anonymity: lack of public awareness risks trust in health system activities. [REVIEW]Caroline Brall & Felix Gille - 2021 - Life Sciences, Society and Policy 17 (1):1-8.
    Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to (...)
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