PediaGen

Ethical, Social, and Legal Issues
in Pediatric Genetic Research

Useful Links


HumGen

www.humgen.org
For more information regarding policies, news and literature particular to stem cell research and to human genetics in general.

American Academy of Pediatrics

http://www.aap.org
This organization regroups more than 60 000 pediatricians. Its website contains general information on the health of children as well as policies, guidelines and publications on different pediatric issues.

American College of Medical Genetics

http://www.acmg.net
The website of the American College of Medical Genetics provides guidelines, policy statements and publications on different topics related to genetics medicine.

Canadian Institute of Child Health / The Health of Canada's Children and Youth: A CICH Profile

http://profile.cich.ca/en/index.php/chapter2
Genetics and Paediatric Health
This module begins with a Genetics Primer that explains genetic concepts such as the genome, inheritance, genes, and DNA. The module goes on to provide a brief examination of the incidence and prevalence of gene-related conditions in Canada. It then describes how genetic services are organized in Canada and the resulting implications for children and families.

Canadian Paediatric Society

http://www.cps.ca
The Canadian Paediatric Society (CPS) is a national association of paediatricians. Among its objectives, the CPS plays an important role in the education of professionals and the public education as well as in the surveillance and research involving children. Its website contains its publications and positions statements.

Childwatch International Research Network

http://www.childwatch.uio.no/
The Childwatch International Research Network is a global network of institutions that collaborate in child research for the purpose of promoting child rights and improving children’s well-being around the world.

International Ethical Research Involving Children Project

http://childethics.com/wp-content/uploads/2013/10/ERIC-compendium-approved-digital-web.pdf
The international Ethical Research Involving Children project, or ERIC, is focused on assisting researchers and others in understanding what it means to plan and conduct ethical research involving children and young people in different geographical, social, cultural and methodological contexts.

Maternal Infant Child & Youth Research Network

http://www.micyrn.ca/
The Mother, Infant, Child and Youth Research Network (MICYRN) is an integrated infrastructure for practice-based networks and research teams and aims to :
1) support collaboration in order to share innovations and best practices, and reduce duplication of efforts;
2) promote harmonization to achieve efficiencies, and reduce redundancy and resource use; and,
3) implement high quality standards for assurance of patient safety and optimal utility of research results.

P³G International Paediatric Platform

http://www.p3g.org/p3g-international-paediatric-research-programme
The P³G International Paediatric Research Programme (IPRP) brings together pediatric experts from around the world to build a common platform. The objective of this platform is to regroup tools and resources on ethical, legal and social issues (ELSI) so as to optimize international pediatric research. Led by Ellen Wright Clayton (Vanderbilt University, USA) and coordinated by Minh Thu Nguyen (Centre of Genomics and Policy (CGP), McGill University, Canada), this new initiative is assisted by the P3G secretariat. P3G hosts the platform on its website and acts as a facilitator for end-users via centrally coordinated access to internationally harmonized policy tools.

Pediatric Ethics Consortium

http://www.pediatricethics.org
This consortium proposes different resources on children and health care, such as information on American laws and policies.
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