Model consent clauses for rare disease research

Author:

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

Funder

FP7 Health

Publisher

Springer Science and Business Media LLC

Subject

Health Policy,Health (social science),Issues, ethics and legal aspects

Reference29 articles.

1. Dawkins HJS, Draghia-Akli R, Lasko P, Lau LPL, Jonker AH, Cutillo CM, et al. Progress in rare diseases research 2010-2016: an IRDiRC perspective. Clin Tranl Sci. 2018;11(1):11–20.

2. Global Alliance for Genomics and Health, “Framework for responsible sharing of genomics and health-related data; c2014. Available from: https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/framework-for-responsible-sharing-of-genomic-and-health-related-data/ . [cited 2018 Dec 19]

3. World Medical Association. World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–4.

4. World Medical Association. World Medical Association Declaration of Taipei on Ethical Considerations regarding Health Databases and Biobanks. Available from: https://www.wma.net/policies-post/wma-declaration-of-taipei-on-ethical-considerations-regarding-health-databases-and-biobanks/ . [cited 2018 Dec 19]

5. World Medical Association. World Medical Association Statement on Genetics and Medicine. Available from: https://www.wma.net/policies-post/wma-statement-on-genetics-and-medicine/ . [cited 2018 Dec 19]

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