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  1. Ethical implications of medical crowdfunding: the case of Charlie Gard.Gabrielle Dressler & Sarah A. Kelly - 2018 - Journal of Medical Ethics 44 (7):453-457.
    Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family’s crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources (...)
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  • Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.Amelia Fiske, Barbara Prainsack & Alena Buyx - 2019 - Journal of Medical Ethics 45 (9):617-622.
    In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...)
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