HumGen
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HumGen.org is the website of the Centre for Genomics and Policy, which is affiliated with McGill University and the Génome Québec Innovation Centre in Canada. The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics research at the international, national, and provincial levels. The HumGen website provides policy makers and the public access to policy statements concerning genetic research.
Mission statement
Designed with policy makers in mind, HumGen.org aims to inform professionals and the general public about the ethical, legal and social issues raised by human genetics research.
Its motto is, "HumGen.org: your resource concerning ethical, legal and social issues in human genetics."
Architecture
HumGen.org is a trilingual web resource, available in English, French, and Spanish, specializing in the ethical, legal, and social issues of human genetics. It comprises five sections: GenBiblio, GenInfo, GenEdit, Frequently Asked Questions, and About Us.
- GenBiblio is an international database of policy statements from 1990 to the present.
- GenInfo is a bimonthly newsletter offering an overview of current developments, including recently adopted policy statements, upcoming events, and team publications.
- GenEdit is an editorial written by a team member and a collaborating international expert that focuses on the ethical, legal, and social issues surrounding human genetics research.
- The Frequently Asked Questions section provides lay definitions for issues that arise in the context of human genetics research. The information is presented in a format that is easy to navigate and explore. It is also designed to allow researchers, students, and members of the general public alike to become more familiar with relevant policy issues in human genetics.
- The About Us section introduces the members of the HumGen team, with their photos, biographies, lists of publications, and current research projects.
History
The Centre for Genomics and Policy
The development of the HumGen.org website is part of a larger Centre for Genomics and Policy project, which was formerly affiliated with the Centre de recherche en droit public (CRDP) of the Université de Montréal under the name Genetics and Society Project.[1]
The Project was launched to respond to the urgent need for informed public policy, with the goal of analyzing international, regional, and national trends in the context of socio-ethical issues in human genetics research.
The Genetics and Society Project began its first investigation, "Ethical Evaluation of Genomic Research," in 1998 and has since completed 33 research projects. Currently, 21 collaborative efforts are underway, ranging from maternal-infant research to cardiovascular disease treatment to stem cell therapy. The Center for Genomics and Policy recently moved from Université de Montréal’s Faculty of Law to McGill University’s Faculty of Medicine.
HumGen.org
Faced with rapid advances in human genetics research, policy makers continue to struggle with a host of complex ethical, legal, and social questions. The HumGen website gives policy makers and the public access to legislation, policy, guidelines, and recommendations from government and nongovernmental organizations worldwide.[1][2]
The website is a unique source of international genetic policy information and has been cited as a critical resource for geneticists who are interested in examining the wider implications of their work.[3]
GenBiblio
Definition
GenBiblio is an international database of legislation, policy, guidelines, and recommendations from 1990 to the present. It contains consensus (normative) documents from over 300 governmental and nongovernmental organizations, published in English, French, and Spanish. It can be searched by jurisdiction, organization, or keyword. For ease of use, it is subdivided into four categories: PediaGen (pediatrics), StemGen (stem cells), PopGen (population genetics), and IpGen (intellectual property).
Purpose
The goal of GenBiblio is to provide policy makers from around the globe with up-to-date normative legislation and policies from reputable organizations such as the United Nations, as well as a reference list of recent (2000 or later) peer-reviewed literature in English, French or Spanish.
Modules
Description
PediaGen provides access to norms aimed at ensuring the protection of children and minors involved in genetic research in clinical contexts. It presents a list of international, regional, and national laws, norms, guidelines, and policies, as well as a selective review of literature. Six themes are covered: bio-banking, research, gene therapy, genetic testing, genetic screening, and pharmacogenetics.
Guidelines
The PediaGen Database can be searched by title, organization (300+), keyword (40 topics), jurisdiction (68 regions and countries), year of publication (1985 to present), or language (English or French).
Selective literature
The selective bibliography can be searched by author(s), title, year (2002 to present), or by topic (40). The most recent results are listed first, in descending chronological order. Most references include a link to the web resource.
Description
StemGen is a research database on stem cell research. It contains international, regional, and national normative information available free of cost to anyone interested in the ethical, legal, and social issues surrounding this topic.
Database of law and policy
The Database can be searched by title, organization (600+), keyword (95), jurisdiction (241 regions and countries), year of publication (1985 to present), or language (English or French).
A unique feature of StemGen is its point-and-click search map. A color-coded legend identifies each country’s approach to stem cell issues: permissive, intermediate, restrictive, or no specific legislation.
Stem cell literature
The selective review of literature in stem cell research covers peer-reviewed articles, book chapters, and monographs published since 2000 in English or French. Items are grouped into three categories: reproductive cloning, stem cell, and therapeutic cloning.
Description
PopGen consists of a database of international, regional, and national laws and policies about human genetic population research and the collection of data and biological samples, as well as a bibliography of selected literature.
Guidelines
The PopGen Database can be searched by title, organization (340), key words (95), jurisdiction (68 regions and countries), year of publication (1985 to present), or language (English or French). Most references include a link to the web resource.
Selective literature
This bibliography can be searched by author, title, date (1990 to present), or keyword (29). Results are listed in descending chronological order. Many references include a link to the web resource.
Glossary
Key terms used in population genetics are defined for the layperson.
IpGen is a search engine of international, regional, and national documents. It can be searched by title, organization (140+), topic (8 research areas), jurisdiction (international, regional, national, provincial), or date (1985 to present). Direct links to documents are provided when available.
GenInfo is a bimonthly newsletter informing readers of recently adopted laws and policies, upcoming events, and publications by the HumGen team.
Description
GenEdit is an editorial article focusing on the ethical, legal, and social issues surrounding human genetics research. Published approximately three times a year, it is authored by a senior researcher, a research associate, and an international collaborator.
Examples
All editorials are archived on HumGen.org. Topics include: direct to consumer genetic tests, warning patients’ relatives of genetic risks, and newborn screening.
Description
The Frequently Asked Questions (FAQs) section of HumGen.org simplifies complex research topics for the general public.
Examples
Some of the topics covered include:
* Property rights in data and biological samples * Eugenics * Stem cell regulation by country * Pharmacogenetics * Genetic discrimination
The Centre for Genomics and Policy
Description
The Centre for Genomics and Policy, affiliated with McGill University’s Faculty of Medicine, was launched on June 1, 2009. Part of the McGill University and Génome Québec Innovation Centre, the new Centre is headed by genomics expert Dr. Bartha Maria Knoppers, an internationally renowned expert in ethics, law, and policy within the fields of human genetics, reproduction, and biotechnology.
Ongoing research and collaborations
The Consortium’s mission is to map the genetic regulatory nodes and networks that control the activity of embryonic stem cells, in particular those responsible for the formation of neural tissues and the blood system. The Consortium is funded by the Ontario Genomics Institute.
The Maternal Infant Children Youth Research Network (MICYRN) is a multidisciplinary network of Canadian researchers, clinicians, and policy experts involved in maternal and child health. It links perinatal, neonatal, and child and youth health researchers in universities across the country with the Canadian Institutes of Health Research. Its goal is to build key infrastructure to generate cross-disciplinary research programs, increase the efficiency, quality, and standards of clinical research, and dramatically improve knowledge transfer for mother-child healthcare.
GRaPH-Int
The Genome-based Research and Population Health International Network (GraPH-INT) is an international community of population health experts. GRaPH-INT promotes the use of genome-based research from the sciences, humanities, and social sciences to improve population health.[4]
The website was launched in June 2006. In 2007, development began on the BioPortal search engine, aimed at optimizing searches on public health genome-based subjects (ethical, legal and social issues, research, literature, epidemiological data, and news and events).
References
- ^ a b Avard, Denise (2001). "Genetics and Society Research at the University of Montréal". Biotech (June/July): 48–49.
- ^ Avard, Denise (2000). "Genetics and Society Project". Community Genetics (3): 102–104.
- ^ Baxter, C (2003). "Are You Aware?". Nature Reviews Genetics. 5 (4): 334. doi:10.1038/nrg1079.
- ^ Burke, W; MJ Khoury; A Stewart; RL Zimmern (2006). "Bellagio Group. The path from genome-based research to population health: development of an international public health genomics network". Genetic Medicine. 7 (8): 451–458.