The Foundation for Genetic Education and Counseling

June 08, 1999

A new foundation devoted to education and counseling about complex human diseases has been formed . The independent foundation will develop and promote genetic literacy for the general public and for health-care professionals. Initial educational programs will target individuals affected by or at risk for complex diseases and will help develop genetic counseling services to individuals who have participated in genetic research protocols.

Day-to-day operation of the foundation will be the responsibility of Joseph D. McInerney, who will serve as director. McInerney joins the foundation after 22 years at the Biological Sciences Curriculum Study, in Colorado Springs, where he served as director for 14 years and also directed development of numerous educational programs related to human genetics and the human genome project.

According to McInerney, "the foundation represents a concrete commitment to anticipate and address the implications of continued research into human genetic variation. The focus in human genetics will continue to expand from single-gene disorders to the complexities of genetic and environmental contributions to disease, including explaining the meaning of concepts such as susceptibility and predisposition. This is a significant challenge, and we look forward to collaborating with other groups, such as genetic counselors and those providing support to patients and families, in the development of new approaches to education and counseling".

Dr. Ann E. Pulver, director of the Johns Hopkins School of Medicine, Department of Psychiatry Epidemiology-Genetics Program will serve as president of the foundation, "The identification of susceptibility genes for complex diseases offers new possibilities for developing medications and approaches to prevention that will improve health and alleviate human suffering. However, these discoveries also might provoke confusion, fear, and stigma in a population that does not understand the fundamentals of genetics or appreciate the complexities of human variation." The foundation will bring together resources to address these concerns.

Initial funding for the foundation has been provided by Genset. Genset is a biotechnology company engaged in the systematic and comprehensive analysis of the human genome to identify and patent genes and regulatory regions related to selected common diseases and drug response. Pascal Brandys, Genset?s CEO, said, "We are committed to addressing in a serious manner the personal and social implications of our search for genes that contribute to the major causes of illness. The new foundation will provide counseling and education for patients and families involved in research, and will develop new approaches to education about complex diseases in general. We are pleased to provide initial funding for this important effort, and we hope that other organizations in the public and private sectors will join us to provide additional support."
For additional information, contact:
Joseph D. McInerney

Foundation for Genetic Education & Counseling

Related Human Genome Articles from Brightsurf:

240 mammals help us understand the human genome
A large international consortium led by scientists at Uppsala University and the Broad Institute of MIT and Harvard has sequenced the genome of 130 mammals and analysed the data together with 110 existing genomes to allow scientist to identify which are the important positions in the DNA.

The National Human Genome Research Institute publishes new vision for human genomics
The National Human Genome Research Institute this week published its 'Strategic vision for improving human health at The Forefront of Genomics' in the journal Nature.

Interpreting the human genome's instruction manual
Berkeley Lab bioscientists are part of a nationwide research project, called ENCODE, that has generated a detailed atlas of the molecular elements that regulate our genes.

3-D shape of human genome essential for robust inflammatory response
The three-dimensional structure of the human genome is essential for providing a rapid and robust inflammatory response but is surprisingly not vital for reprogramming one cell type into another.

The genome of chimpanzees and gorillas could help to better understand human tumors
A new study by researchers from the Institute of Evolutionary Biology (IBE), a joint center of UPF and the Spanish National Research Council (CSIC), shows that, surprisingly, the distribution of mutations in human tumors is more similar to that of chimpanzees and gorillas than that of humans.

It's in our genome: Uncovering clues to longevity from human genetics
Researchers from Osaka University found that high blood pressure and obesity are the strongest factors reducing lifespan based on genetic and clinical information of 700,000 patients in the UK, Finland and Japan.

New limits to functional portion of human genome reported
An evolutionary biologist at the University of Houston has published new calculations that indicate no more than 25 percent of the human genome is functional.

Synthesizing the human genome from scratch
For the past 15 years, synthetic biologists have been figuring out how to synthesize an organism's complete set of DNA, including all of its genes.

Science and legal experts debate future uses and impact of human genome editing in Gender & the Genome
Precise, economical genome editing tools such as CRISPR have made it possible to make targeted changes in genes, which could be applied to human embryos to correct mutations, prevent disease, or alter traits.

Evolution purged many Neanderthal genes from human genome
Neanderthal genetic material is found in only small amounts in the genomes of modern humans because, after interbreeding, natural selection removed large numbers of weakly deleterious Neanderthal gene variants, according to a study by Ivan Juric and colleagues at the University of California, Davis, published Nov.

Read More: Human Genome News and Human Genome Current Events is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to