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Consumer Genetics Resources
Online Genetics Resources for Consumers:
ASHG Fact Sheet: “The Top 6 Things Everyone Should Know About Genetics”
ASHG Brochure: “How Lifestyle Impacts Your Health”
- An illustrated brochure written for the general public that describes how certain lifestyle behaviors can be beneficial or harmful to your health. It identifies and gives examples of types of health behaviors that can increase or decrease
disease risk.
National Society of Genetic Counselors (NSGC)
- NSGC is a sister organization of ASHG that serves as the leading voice, authority and advocate for the genetic counseling profession. The NSGC
Web site features a
consumer information section with genetics FAQ’s,
as well as information and resources for the general public on topics such as genetic testing and family history. The NSGC site also features a search tool called ResourceLink that was developed to assist consumers in locating genetics services in their area.
The National Human Genome Research Institute (NIH/NHGRI)
- The NHGRIwebsite features a wealth of
basic
genetics education materials and other
resources that were created for use by the
general public. NHGRI also drafted a series of “Fact Sheets about Science” that explain complex genetic concepts and research techniques to a non-scientist audience. Teachers, students and the general public will find the materials clearly written and easy to understand.
CDC National Office of Public Health Genomics (NOPHG)
- The CDC/NOPHG Web site provides a wealth
of genetics information and materials for
the general public, including:
National Institute of General Medical Science (NIH/NIGMS)
- NIGMS Web site also provides a wealth of genetics information and materials for the general public on their website, including:
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“The New Genetics”
- An in-depth educational brochure written for the general public that provides basic information about how genes work, the role they play in disease risk and outcome, and the ethical, legal and social impact of genetic research.
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“Genes and Populations”
- A brief educational brochure for consumers that uses a Q&A format to explain how genes contribute to disease risk, and how they interact with lifestyle factors to affect health.
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“Medicines for You: Studying How Your Genes Can Make a Difference”
- This consumer fact sheet explains how genes can influence your response to different medicines. It also provides information about this type of research, which is called pharmacogenetics or pharmacogenomics.
The U.S. Department of Energy (DOE) Genomics
- The DOE Genomics Web site features helpful FAQ’s on genetics topics and issues relevant to consumers, including:
The National Cancer Institute (NIH/NCI): “Understanding Gene Testing”
- The NCI produced this “Access Excellence Activity” to help the public understand basic information about genetics, genetic diseases and testing. An updated version of this information can be found in the NCI’s “Understanding Cancer” series.
Genetic Alliance & ASHG: “Guide to
Understanding Genetics” (June 2006)
– A group of experts from Genetic Alliance
and ASHG worked in partnership to create
this straightforward guide for the general
public, health care providers, and their
patients. The guide covers basic information
about genetics concepts, and provides
in-depth information on genetic conditions,
newborn screening, family health history,
genetic counseling, and the different types
of genetic tests and their applications.
Genetics Resources On the Web (GROW)
- A search engine and resource that optimizes the use of the web to provide health professionals and the public with high quality information related to human genetics, with a particular focus on genetic medicine and health.
National Library of Medicine (NLM) Genetics Home Reference
- An online guide to understanding genetic conditions that provides consumer-friendly information about the effects of genetic variations on human health.
U.S. Department of Energy (DOE): “Primer on Genomics’ Impact on Science and Society”
- This resource includes a basic “Genetics 101” primer, a glossary that includes definitions of genetic terms, and a series of fact sheets on topics such as genomic medicine, pharmacogenetics, the impact of genetics on society, etc.
The Human Genome Project (HGP)
- The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) sponsored and coordinated the HGP over a 13-year period. Although it was completed in 1993, the information scientists gathered during this project has created the field of genomics, which has enabled scientists to develop an understanding of genetic material on a large scale.
University of Washington Center for Genomics & Public Health
- This Web site features a comprehensive listing of links to genetics information and resources for consumers, organized by subject area or topic. For more information on genetic testing and family health history, please see the Center’s homepage.
The Dolan DNA Learning Center: “Your Genes Your Health”
- This multimedia online resource is a guide to genetic disorders that provides information on a variety of specific human diseases that have been linked to genetics, such as cystic fibrosis, sickle cell anemia, Fragile X syndrome and Alzheimer disease.
The Wellcome Trust Sanger Institute: YourGenome.org
- This Web site provides balanced information, news and discussion in the genomics field. YourGenome.org aims to answer basic questions about genetics in the 'general' information sections (created for a non-expert audience) and also explore more advanced concepts in the 'detailed' information sections (designed for those with some science background, ages 16+). The site also provides
two different
lists of links to online resources
- one list is in
HTML format, and the other can be downloaded as a
PDF
document.
Personalized Medicine and Medical Genetics Information/Resources:
ASHG
Fact Sheet on Medical Genetics
- This ASHG fact sheet provides basic background information about medical genetics and defines terms that are commonly used in the field.
American College of Medical Genetics (ACMG)
- ACMG is a sister organization of ASHG that is responsible for providing education, resources and a voice for the medical genetics profession, and strives to make genetic services available to the public to improve health.
Personalized Medicine Coalition (PMC)
- ASHG is a member of this independent, non-profit group that works to advance the understanding and adoption of personalized medicine for the ultimate benefit of patients.
CDC: “Pharmacogenomics and Public Health”
- This CDC
Web site features resources and information on the public health perspective of Pharmacogenomics as a “Promise for Targeted Disease Prevention.” The site’s content focuses on relating how the scientific advances in genetics research will revolutionize medicine through the development of personalized treatments, and it includes a special section with downloadable slide presentations on the topic.
National Center for Biotechnology Information (NIH/NCBI): “One Size Does Not Fit All: The Promise of Pharmacogenomics”
- This site provides a summary of the key issues and challenges related to the advancement and adoption of personalized medicine that are commonly encountered by legislators, health care professionals and consumers.
The Human Genome Project (HGP): “Medicine and the New Genetics”
- The medical industry is building upon the knowledge, resources, and technologies originating from the HGP to further understanding of genetic contributions to human health. As a result of this expansion of genomics into human health applications, the field of genomic medicine was born. Genetics is playing an increasingly important role in the diagnosis, monitoring, and treatment of diseases.
Mayo Clinic:
“Personalized Medicine: Tailoring Treatment to Your Genetic Profile”
- An online guide that provides
consumers with a basic understanding of
personalized medicine and the important role
it will play in future health care practice
as a method of predicting, preventing and
treating individuals at risk of inheriting a
genetic disease.
Genetic Testing Information & Resources:
National Human Genome Research Institute (NHGRI/NIH):
"Overview of Genetic Testing"
U.S. Federal Trade Commission (FTC): “At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Perscription”
- This fact sheet is intended to inform
the general public and health care
practitioners about issues of concern surrounding genetic testing. The FTC provides guidelines for interpreting test results and evaluating companies’ claims about the validity and accuracy of
direct-to-consumer genetic testing products.
The Human Genome Project (HGP):
"Gene Testing"
- This HGP fact sheet offers
information for the general public about
genetic testing, including a basic
explanation of what genetic testing is and
how it works.
Mayo Clinic: “Genetic Testing for Genetic Disorders: Weighing the Benefits and Risks”
- An online guide that provides consumers with a basic understanding of the “pros” and “cons” of genetic testing, and the implications for individuals at risk of inheriting a genetic disease. Also see the Mayo Clinic’s article titled,
“Genetic Testing: What to Expect”
for more information.
Family History Resources & Tools:
The American Society of Human Genetics (ASHG):
Genetic Alliance: Community Centered Family
Health History (CCFHH) Brochure Series
- This series of brochures contains helpful
information about the importance of family
health history in determining disease risk.
The brochures provide consumers with simple
step-by-step instructions for collecting and
compiling a family health history; they also
provide instructions for health care
providers explaining how to effectively
interpret and use this information in
clinical practice.
Institute for Cultural Partnerships (ICP)
Family History Outreach Initiative:
U.S. Surgeon General’s Family History Initiative:
CDC National Office of Public Health Genomics (NOPHG)
Family History Resources:
University of Utah Genetic Science Learning Center
- The Web site for this outreach
education program, ”Using Family History to Improve your Health”, includes excellent resources and information to help people understand how genetics affects their lives and its implications for society. The Utah Department of Health also offers a family health history toolkit on their
Web site.
The Center for Medical Genetics: "MyGenerations"
- MyGenerations is an interactive web-based tool that helps
consumers collect personal and family
health history and draw an interactive family tree to determine your risk of developing cancer. You can
print and share the report with your health care providers to develop an individualized plan for early cancer detection and prevention.
Mayo Clinic: “Medical History: How to Compile Your Medical Family Tree”
- This resource provides consumers with information about the importance of knowing your family’s medical history, as well as a simple step-by-step guide to compiling a family health history tree to share with doctors.
Genetics Education Information & Resources:
The Federation of American Societies for Experimental Biology (FASEB):
National Human Genome Research Institute (NIH/NHGRI): Education Resources
- This section of the NHGRI Web site provides a wealth of educational materials and information about genetics and genomics for students, teachers and the general public:
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National DNA Day Web site & Online Teaching Tool Resources
- NHGRI and ASHG collaborate to organize annual DNA Day events that commemorate the completion of the Human Genome Project and the discovery of DNA's double helix. Every year on April 25th, hundreds of DNA Day events take place across the country that provide unique opportunities for students, teachers and the public to learn more about genetics from NHGRI and ASHG experts.
AsktheGeneticist.org
- A collaborative effort of the Department of Human Genetics at Emory University and the Department of Genetics at the University of Alabama at Birmingham that answers questions
from the general public about genetic concepts, and the etiology, treatment, research, testing and predisposition to genetic disorders.
Access Excellence Resource Center
- A list of links to Web sites featuring a
wealth of genetics information of interest to educators, students and the general public.
Glossaries & Definitions of Genetics Terms:
National Human Genome Research Institute (NHGRI): “Talking Glossary of Genetic Terms”
- This interactive and searchable online glossary is a free tool that was created to help people without scientific backgrounds understand the terms and concepts used in genetic research. Each term has information about its pronunciation, images and additional links to related terms. Students, teachers and parents will find that this glossary is an easy-to-use learning resource that provides a wealth of basic information on genetics.
Human Genome Project (HGP) Genetics Dictionary - “Genomics and Its Impact on Medicine and Society: A Primer”
- This resource is featured on the Human Genome Project Information Web site as an online glossary that provides definitions and explanations of basic genetics terms and concepts.
University of Kansas Medical Center: “Glossaries of Genome/Human Genetics Terms”
- The University of Kansas Medical Center Web site features a comprehensive list of links to online genetic glossaries and dictionaries.
Genetic
Alliance: “Alphabet Soup: Genetic Terms & Acronyms for Consumers”
- This resource features an alphabetized list of the names and acronyms of key genetics organizations, as well as a glossary with definitions of basic genetics terms.
Genetics News Sites:
Audio Clips & Podcasts:
 Genomics: Towards a Healthier You
NHGRI – DNA Day 2006 Webcast & Podcast
Genomics: Towards a Healthier You features Barbara Biesecker, M.S., a genetic counselor at NHGRI. The webcast presents information on why genetics is important to health, and it also provides information on genetic counseling as a career.
Interview with Muin Khoury (CDC/NOPHG) on
Personal Genomics Services Being Offered
Directly to Consumers
The New England Journal of Medicine
- Jan 10, 2008
Dr. Muin Khoury, MD, PhD discusses the potential benefits and risks involved in the applications and use of direct-to-consumer genetic testing. Dr. Khoury is the director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention (CDC), and an active member of the ASHG Executive Board.
CDC Featured Podcast:
"Family History
- An Early Warning for Your Child"
The CDC’s National Center on Birth Defects
& Developmental Disabilities - Nov 28, 2007
Dr. Paula Yoon and Dr. Tracy Trotter from the CDC address the use of family health history information in pediatric settings. This podcast speaks to both practitioners and parents in describing how “collecting family history information could save your child's life.” Parents should listen to learn more about how knowing this important information could benefit the entire family.
Video Clips & DVD's:
Genetics
Society of America (GSA): “Conversations in
Genetics” (DVD) – The GSA produced
this DVD to record and preserve the history
of genetic discovery through interviews with
prominent scientists in the field. In these
“Conversations in Genetics,” interviewees
describe their research accomplishments,
reflect on how the field has evolved, and
recall the paths they took during various
phases of their lives that led to their
work.
"The Importance of Family Health History: An Interview with Acting U.S. Surgeon General Steven Galson" (1:10)
CNN “Health Minute” - Nov 22, 2007
CNN’s Judy Fortin interviews Acting U.S. Surgeon General Steven Galson about the importance of family health history in tracking and preventing genetic disease.
Slide Presentations:
ASHG Presentation: “Characteristics of Genetic Data”
Dr. Joann Boughman, PhD, ASHG Executive Vice President
ASHG Presentation: “Human Genetics: Ethical, Legal and Social Issues”
Dr. Joann Boughman, PhD, ASHG Executive Vice President
ASHG Presentation: “The Patterns of Genetic Inheritance”
Dr. Joann Boughman, PhD, ASHG Executive Vice President
CDC:
"Genomics and the Future of Public Health" Symposium
Presentations
- A series of slide and video presentations from the CDC’s workshop held on May 5, 2003; features digital clips of presentations by ASHG members, including:
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Dr. Francis S. Collins (Director, National Human Genome Research Institute, NIH)
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Dr. Muin J. Khoury (Director, National Office of Public Health Genomics, CDC;
ASHG Executive Board Member, 2006-2009)
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