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
joemcinerney@genetic-medicine.org
443-255-1186