Model consent clauses for rare disease research

Minh Thu Nguyen, on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé (+2 others)
2019 BMC Medical Ethics  
Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants' overall protection.
doi:10.1186/s12910-019-0390-x pmid:31370847 pmcid:PMC6676617 fatcat:ktb6cibb5nbxlhwdg3l7w6eigu