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Genes and Populations

Genes y Poblaciones
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After decades of research, scientists have identified all of the genetic "letters" that spell out the "words" of our genes. This library of genes--- called the human genetic code, or the human genome--- is the complete set of instructions for creating you or me. But scientists' ability to read the human genetic code is only a beginning. It will be many more years before researchers figure out what all of our genes do. This information holds tremendous promise for treating, curing, and preventing diseases. By participating in genetics research, you can help scientists understand how our genes influence the diseases we develop.

 Does everybody have the same genes?
 What does it mean when someone says you have a genetic risk?
 What is genetics?
 How do scientists learn how genes play a role in our risks for fighting or developing disease?
 How do scientists find genes linked to human diseases?
 Why do researchers sometimes study ethnic and racial groups?
 Have researchers figured out how errors in genes can cause disease?
 What's involved in this sort of genetics research study?
 Can researchers study my genome without my knowing about it or giving my permission?
 What are the benefits of genetics research to the groups and populations whose members volunteer to participate?
 What are the risks?
 How do researchers protect people who volunteer to take part in genetics research?
 Are there other protections for the DNA samples collected by researchers?

The National Institutes of Health is dedicated to listening to both individuals and communities about the impact of genetics research. The National Institutes of Health held the first "community consultation" on the topic in September 2000. An ongoing dialogue with communities has only begun. More discussions with various communities have been held or are being planned.

For more information, or to learn more about how you or your community can get involved, contact the National Institute of General Medical Sciences Office of Communications and Public Liaison (301-496-7301) or visit the World Wide Web sites below.

National Institute of General Medical Sciences Human Genetic Cell Repository
http://www.nigms.nih.gov/about_nigms/repository.html

National Institutes of Health Pharmacogenetics Research Network
http://www.nigms.nih.gov/pharmacogenetics/

National Human Genome Research Institute--- Ethical, Legal, and Social Implications of Human Genetics Research
http://www.genome.gov/page.cfm?pageID=10001618

This publication can be made available in formats that are more accessible to people with disabilities. To request this material in a different format, contact the NIGMS Office of Communications and Public Liaison at 301-496-7301, TDD 301-402-6327, or write to the office at the following address: 45 Center Drive MSC 6200, Bethesda, MD 20892-6200.

U. S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service
National Institutes of Health
National Institute of General Medical Sciences

NIH Publication No. 01-5021
December 2001
http://www.nigms.nih.gov