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  1.  43
    “You hoped we would sleep walk into accepting the collection of our data”: controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.Sigrid Sterckx, Vojin Rakic, Julian Cockbain & Pascal Borry - 2016 - Medicine, Health Care and Philosophy 19 (2):177-190.
    An ‘Information Centre’ has recently been established by law which has the power to collect, collate and provide access to the medical information forall patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called ‘care.data’ scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a (...)
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  2.  54
    Patenting Foundational Technologies: Lessons From CRISPR and Other Core Biotechnologies.Oliver Feeney, Julian Cockbain, Michael Morrison, Lisa Diependaele, Kristof Van Assche & Sigrid Sterckx - 2018 - American Journal of Bioethics 18 (12):36-48.
    In 2012, a new and promising gene manipulation technique, CRISPR-Cas9, was announced that seems likely to be a foundational technique in health care and agriculture. However, patents have been granted. As with other technological developments, there are concerns of social justice regarding inequalities in access. Given the technologies’ “foundational” nature and societal impact, it is vital for such concerns to be translated into workable recommendations for policymakers and legislators. Colin Farrelly has proposed a moral justification for the use of patents (...)
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  3.  88
    Ethical sharing of health data in online platforms- which values should be considered?Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo & Vojin Rakic - 2017 - Life Sciences, Society and Policy 13 (1):1-27.
    Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...)
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  4.  32
    Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users.Aviad E. Raz, Emilia Niemiec, Heidi C. Howard, Sigrid Sterckx, Julian Cockbain & Barbara Prainsack - 2020 - New Genetics and Society 39 (4):459-482.
    23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware (...)
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  5.  74
    Raising the Barriers to Access to Medicines in the Developing World – The Relentless Push for Data Exclusivity.Sigrid Sterckx, Julian Cockbain & Lisa Diependaele - 2016 - Developing World Bioethics 17 (1):11-21.
    Since the adoption of the WTO-TRIPS Agreement in 1994, there has been significant controversy over the impact of pharmaceutical patent protection on the access to medicines in the developing world. In addition to the market exclusivity provided by patents, the pharmaceutical industry has also sought to further extend their monopolies by advocating the need for additional ‘regulatory’ protection for new medicines, known as data exclusivity. Data exclusivity limits the use of clinical trial data that need to be submitted to the (...)
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  6. Access to human tissues for research and product development.Jean‐Paul Pirnay, Etienne Baudoux, Olivier Cornu, Alain Delforge, Christian Delloye, Johan Guns, Ernst Heinen, Etienne Van den Abbeel, Alain Vanderkelen, Caroline Van Geyt, Ivan van Riet, Gilbert Verbeken, Petra De Sutter, Michiel Verlinden, Isabelle Huys, Julian Cockbain, Christian Chabannon, Kris Dierickx, Paul Schotsmans, Daniel De Vos, Thomas Rose, Serge Jennes & Sigrid Sterckx - unknown
     
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  7.  20
    Similar or the Same? Why Biosimilars are not the Solution.Lisa Diependaele, Julian Cockbain & Sigrid Sterckx - 2018 - Journal of Law, Medicine and Ethics 46 (3):776-790.
    Advancements in the field of biotechnology have accelerated the development of drugs that are manufactured from cultures of living cells, commonly referred to as “biologics.” Due to the complexity of the production process, generic biologics are unlikely to be chemically identical to the reference product, and accordingly are referred to as “biosimilars.”Encouraging the development of biosimilars has been presented as the key solution to decrease prices and increase access to biologics, but the development and use of biosimilars continues to raise (...)
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  8.  21
    Patenting Foundational Technologies: Recent Developments in the CRISPR Patent Struggle.Julian Cockbain & Sigrid Sterckx - 2020 - American Journal of Bioethics 20 (4):11-12.
    Volume 20, Issue 4, May 2020, Page 11-12.
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  9.  45
    Response to Open Peer Commentaries on “Patenting Foundational Technologies: Lessons From CRISPR and Other Core Biotechnologies”.Sigrid Sterckx, Kristof Van Assche, Lisa Diependaele, Michael Morrison, Julian Cockbain & Oliver Feeney - 2019 - American Journal of Bioethics 19 (1):W10-W13.
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