RMGA Statement of Principles on the Return of Research Results and Incidental Findings

2013 ◽  
Author(s):  
Karine SSnncal ◽  
Emmanuelle LLvesque ◽  
Conrad Fernandez ◽  
Anne-Marie Tasss ◽  
Ma'n H. Zawati ◽  
...  
Keyword(s):  
Incidental Findings ◽  
Research Results ◽  
Return Of Research Results

scholarly journals Population studies: return of research results and incidental findings Policy Statement

2012 ◽  
Vol 21 (3) ◽  
pp. 245-247 ◽  
Author(s):  
Bartha Maria Knoppers ◽  
Mylène Deschênes ◽  
Ma’n H Zawati ◽  
Anne Marie Tassé
Keyword(s):  
Incidental Findings ◽  
Population Studies ◽  
Policy Statement ◽  
Research Results ◽  
Return Of Research Results

scholarly journals Statement of principles on the return of research results and incidental findings in paediatric research: a multi-site consultative process

Genome ◽  
2015 ◽  
Vol 58 (12) ◽  
pp. 541-548 ◽  
Author(s):  
Karine Sénécal ◽  
Vasiliki Rahimzadeh ◽  
Bartha M. Knoppers ◽  
Conrad V. Fernandez ◽  
Denise Avard ◽  
...  
Keyword(s):  
Incidental Findings ◽  
Ethical Issues ◽  
Grey Literature ◽  
Genetic Research ◽  
Return Of Results ◽  
Paediatric Research ◽  
Consultation Process ◽  
Research Results ◽  
Stakeholder Groups ◽  
Return Of Research Results

This paper proposes a set of recommendations for the return of research results and incidental findings in paediatrics. The Network of Applied Genetic Medicine of Quebec spearheaded the initiative to develop the Statement of Principles on the Return of Research Results and Incidental Findings, which was the result of a consultation process with clinical and research experts in the field. To formulate the Statement of Principles, the authors (i) reviewed empirical and grey literature on the return of research results and incidental findings in Europe and Canada, (ii) conducted a qualitative study of stakeholder groups, (iii) developed, and (iv) validated the recommendations through consultations with the stakeholder groups. The Statement of Principles provides a useful disclosure tool for deciding when, and under what circumstances to return research results and incidental findings. It addresses the issue of return of results in genetic research generally, and has also specific principles for various research contexts, including paediatric research. It delineates ethical issues unique to paediatric research, and provides a framework to guide research ethics committees as well as the research community in addressing these issues.

Return of Research Results to Study Participants

JAMA ◽  
2018 ◽  
Vol 320 (5) ◽  
pp. 435 ◽  
Author(s):  
Charlene A. Wong ◽  
Adrian F. Hernandez ◽  
Robert M. Califf
Keyword(s):  
Research Results ◽  
Return Of Research Results ◽  
Study Participants

The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer

2007 ◽  
Vol 48 (4) ◽  
pp. 441-446 ◽  
Author(s):  
C.V. Fernandez ◽  
D. Santor ◽  
C. Weijer ◽  
C. Strahlendorf ◽  
A. Moghrabi ◽  
...  
Keyword(s):  
Children With Cancer ◽  
Research Results ◽  
Return Of Research Results
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