HumGen
Encyclopedia
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.
Its motto is, "HumGen.org: your resource concerning ethical, legal and social issues in human genetics."
under the name Genetics and Society Project.
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.
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.
), StemGen (stem cells), PopGen (population genetics
), and IpGen (intellectual property
).
, as well as a reference list of recent (2000 or later) peer-reviewed literature in English, French or Spanish.
, genetic testing
, genetic screening, and pharmacogenetics.
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.
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.
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.
* Property rights in data and biological samples
* Eugenics
* Stem cell regulation by country
* Pharmacogenetics
* Genetic discrimination
, reproduction, and biotechnology
.
. 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.
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).
McGill University
Mohammed Fathy is a public research university located in Montreal, Quebec, Canada. The university bears the name of James McGill, a prominent Montreal merchant from Glasgow, Scotland, whose bequest formed the beginning of the university...
and the Génome Québec Innovation Centre in Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
. The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics
Human genetics
Human genetics describes the study of inheritance as it occurs in human beings. Human genetics encompasses a variety of overlapping fields including: classical genetics, cytogenetics, molecular genetics, biochemical genetics, genomics, population genetics, developmental genetics, clinical genetics,...
research at the international, national, and provincial levels. The HumGen website provides policy makers and the public access
Public Access
Public Access is a 1993 American drama film directed by Bryan Singer in his feature film debut. Singer also wrote the screenplay with Christopher McQuarrie and Michael Feit Dougan. The film was shot in 18 days for US$250,000. It was screened at the 1993 Sundance Film Festival, where it was...
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.
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 MontréalUniversité de Montréal
The Université de Montréal is a public francophone research university in Montreal, Quebec, Canada. It comprises thirteen faculties, more than sixty departments and two affiliated schools: the École Polytechnique and HEC Montréal...
under the name Genetics and Society Project.
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.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.
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 (pediatricsPediatrics
Pediatrics or paediatrics is the branch of medicine that deals with the medical care of infants, children, and adolescents. A medical practitioner who specializes in this area is known as a pediatrician or paediatrician...
), StemGen (stem cells), PopGen (population genetics
Population genetics
Population genetics is the study of allele frequency distribution and change under the influence of the four main evolutionary processes: natural selection, genetic drift, mutation and gene flow. It also takes into account the factors of recombination, population subdivision and population...
), and IpGen (intellectual property
Intellectual property
Intellectual property is a term referring to a number of distinct types of creations of the mind for which a set of exclusive rights are recognized—and the corresponding fields of law...
).
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 NationsUnited Nations
The United Nations is an international organization whose stated aims are facilitating cooperation in international law, international security, economic development, social progress, human rights, and achievement of world peace...
, as well as a reference list of recent (2000 or later) peer-reviewed literature in English, French or Spanish.
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 therapyGene therapy
Gene therapy is the insertion, alteration, or removal of genes within an individual's cells and biological tissues to treat disease. It is a technique for correcting defective genes that are responsible for disease development...
, genetic testing
Genetic testing
Genetic testing is among the newest and most sophisticated of techniques used to test for genetic disorders which involves direct examination of the DNA molecule itself. Other genetic tests include biochemical tests for such gene products as enzymes and other proteins and for microscopic...
, 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 bibliographyBibliography
Bibliography , as a practice, is the academic study of books as physical, cultural objects; in this sense, it is also known as bibliology...
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 databaseDatabase
A database is an organized collection of data for one or more purposes, usually in digital form. The data are typically organized to model relevant aspects of reality , in a way that supports processes requiring this information...
on stem cell
Stem cell
This article is about the cell type. For the medical therapy, see Stem Cell TreatmentsStem cells are biological cells found in all multicellular organisms, that can divide and differentiate into diverse specialized cell types and can self-renew to produce more stem cells...
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).Stem Cell World Map
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.Ipgen
IpGen is a search engineSearch engine
A search engine is an information retrieval system designed to help find information stored on a computer system. The search results are usually presented in a list and are commonly called hits. Search engines help to minimize the time required to find information and the amount of information...
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
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
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 geneticsHuman genetics
Human genetics describes the study of inheritance as it occurs in human beings. Human genetics encompasses a variety of overlapping fields including: classical genetics, cytogenetics, molecular genetics, biochemical genetics, genomics, population genetics, developmental genetics, clinical genetics,...
, reproduction, and biotechnology
Biotechnology
Biotechnology is a field of applied biology that involves the use of living organisms and bioprocesses in engineering, technology, medicine and other fields requiring bioproducts. Biotechnology also utilizes these products for manufacturing purpose...
.
International Regulome Consortium
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.MICYRN
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 ResearchCanadian Institutes of Health Research
Canadian Institutes of Health Research is the major federal agency responsible for funding health research in Canada. It is the successor to the Medical Research Council of Canada. It aims to create new health knowledge, and to translate that knowledge from the research setting into real world...
. 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.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).