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Rare disease research: Breaking the privacy barrier

Applied and Translational Genomics, 01 June 2014, Vol.3(2), pp.23-29 [Peer Reviewed Journal]

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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

European Journal of Human Genetics, 2016, Vol.24(9), pp.1248-1254 [Peer Reviewed Journal]

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Dynamic consent: a potential solution to some of the challenges of modern biomedical research

Budin-Ljøsne, Isabelle; Teare, Harriet J. A. Kaye, Jane; Beck, Stephan; Bentzen, Heidi Beate; Caenazzo, Luciana; Collett, Clive; D’Abramo, Flavio; Felzmann, Heike; Finlay, Teresa; Javaid, Muhammad Kassim; Jones, Erica; Katić, Višnja; Simpson, Amy; Mascalzoni, Deborah (2017). Dynamic consent: a potential solution to some of the challenges of modern biomedical research. BMC Medical Ethics 18 , [Peer Reviewed Journal]

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Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

NFR/221580 [Peer Reviewed Journal]

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How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF)

Journal of Community Genetics, 2018, Vol.9(2), pp.169-176 [Peer Reviewed Journal]

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The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results

Journal of Translational Medicine, 2015, Vol.13

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The challenges of the expanded availability of genomic information: an agenda-setting paper

Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C. Howard, Heidi Carmen; Feeney, Oliver; Jackson, Leigh; Mascalzoni, Deborah; Mendes, Álvaro; Peterlin, Borut; Riso, Brigida; Shabani, Mahsa; Skirton, Heather; Sterckx, Sigrid; Vears, Danya; Wjst, Matthias; Felzmann, Heike (2017). The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics 9 (2), 103-116 [Peer Reviewed Journal]

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Practical Barriers and Ethical Challenges in Genetic Data Sharing

International Journal of Environmental Research and Public Health, 01 August 2014, Vol.11(8), pp.8383-8398 [Peer Reviewed Journal]

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Informed Consent in the Genomics Era

PLoS Medicine, Sep 2008, Vol.5(9), p.e192 [Peer Reviewed Journal]

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The challenges of the expanded availability of genomic information: an agenda-setting paper

Journal of Community Genetics, Sep 2017, Vol.Ahead of print

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