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A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the (...) |
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Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated (...) |
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This chapter first presents the major characteristics of multi-level governance and gives examples thereof from the European and the transnational level. It then identifies a number of properties of multi-level governance networks that can cause prejudice to their democratic “anchorage”: the widespread cooperative logic of interactions within networks, the weak visibility of networks due to their frequent lack of formalization, their loose coupling with the representative circuit, the lack of public accountability of some network actors, and the prevalence of “interdependence” (...) |
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The research importance of biobanked biological materials and their derived data is growing, especially as these are increasingly linked with individual and population‐level medical and health information. The number, diversity, and size of biobanks are growing in tandem. So, too, is the number of individuals whose donations are being used in biobank‐supported research, with or without their knowledge. Pretty soon, we all will be “participants” in a variety of research projects we know nothing about. Until recently, our leftover tissue or (...) |
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In biomedical research lack of trust is seen as a great threat that can severely jeopardise the whole biomedical research enterprise. Practices, such as informed consent, and also the administrative and regulatory oversight of research in the form of research ethics committees and Institutional Review Boards, are established to ensure the protection of future research subjects and, at the same time, restore public trust in biomedical research. Empirical research also testifies to the role of trust as one of the decisive (...) |
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The first of two commentaries on "Respecting Donors to Biobank Research," from the January-February 2013 issue. © 2013 by The Hasti. |
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Informed consent is central to modern research ethics. Informed consent procedures have mainly been justified in terms of respect for autonomy, the core idea being that it should be every competent individual’s right to decide for herself whether or not to participate in scientific studies. A number of conditions are normally raised with regard to morally valid informed consent. These include that potential research subjects get adequate information, understand those aspects that are relevant to them, and, based on that information, (...) |
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Trust among current and future patients is essential for the success of biobank research. The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on “genetic integrity” in Sweden, third parties will be prohibited from requesting or seeking (...) |
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