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Model consent clauses for rare disease research

Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger & Bartha Maria Knoppers

BMC Medical Ethics 20 (1):1-7 (2019)

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Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations.Mark A. Rothstein, Ma'N. H. Zawati, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Catherine M. Hammack-Aviran, James W. Hazel, Yann Joly, Michael Lang, Dimitri Patrinos, Andrea Saltzman & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (4):705-731.details Download Export citation Bookmark 1 citation
Who Cares About Care? Family Members as Moral Actors in Treatment Decision Making.Anna-Henrikje Seidlein & Sabine Salloch - 2020 - American Journal of Bioethics 20 (6):80-82.details Volume 20, Issue 6, June 2020, Page 80-82. Download Export citation Bookmark 2 citations
The Genetic Family as Patient?Bartha Maria Knoppers & Kristina Kekesi-Lafrance - 2020 - American Journal of Bioethics 20 (6):77-80.details Volume 20, Issue 6, June 2020, Page 77-80. Download Export citation Bookmark 2 citations

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