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  1. Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine.Christian Hervé, Guillaume Vogt, Pierre Laurent-Puig, Christophe Tourneau, Charles-Henry Frouart, Marie-France Mamzer-Bruneel & Henri-Corto Stoeklé - 2018 - Science and Engineering Ethics 24 (1):307-322.
    The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision (...)
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  • Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population.Thomas Ploug & Søren Holm - 2017 - BMC Medical Ethics 18 (1):51.
    The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent (...)
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  • Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
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  • 23andMe: a new two-sided data-banking market model.Henri-Corto Stoeklé, Marie-France Mamzer-Bruneel, Guillaume Vogt & Christian Hervé - 2016 - BMC Medical Ethics 17 (1):1-11.
    BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...)
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  • Molecular Tumor Boards: Ethical Issues in the New Era of Data Medicine.Henri-Corto Stoeklé, Marie-France Mamzer-Bruneel, Charles-Henry Frouart, Christophe Le Tourneau, Pierre Laurent-Puig, Guillaume Vogt & Christian Hervé - 2018 - Science and Engineering Ethics 24 (1):307-322.
    The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new vision (...)
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