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  1.  35
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
    BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...)
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    Back to WHAT? The role of research ethics in pandemic times.Jan Helge Solbakk, Heidi Beate Bentzen, Søren Holm, Anne Kari Tolo Heggestad, Bjørn Hofmann, Annette Robertsen, Anne Hambro Alnæs, Shereen Cox, Reidar Pedersen & Rose Bernabe - 2020 - Medicine, Health Care and Philosophy 24 (1):3-20.
    The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and (...)
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    If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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    What ethical approaches are used by scientists when sharing health data? An interview study.Deborah Mascalzoni, Heidi Beate Bentzen & Jennifer Viberg Johansson - 2022 - BMC Medical Ethics 23 (1):1-12.
    BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were collecting, using, or sharing (...)
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