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Reporting Genetics News: Resources for the Media


 

Challenges in Reporting Genetics News:

 

CDC National Office of Public Health Genomics (NOPHG) - The CDC/NOPHG Web site provides a wealth of information and materials on the clinical applications of genetics in general health care practice, the resulting impact on public health, and related ethical, legal and social issues:

The Chronicle of Higher Education: “Science and Public Engagement” (Oct. 2006) – In this article, Dr. Alan Leshner shares the lessons learned from public engagement communication efforts surrounding the launch of the Human Genome Project. He describes how dialogue can help assuage public fears about advances in technology, new areas of research and discoveries in human genetics.

 


 

Related Journal Articles:

 

Genome Studies: Genetics by Numbers
Nature - Jan 31, 2008
Genomewide association studies are starting to turn up increasingly reliable disease markers. Monya Baker investigates where we are now and what comes next, and she describes how scientists and the media are communicating information about this research to the public.

How Geneticists Can Help Reporters Get Their Story Right
Nature Review Genetics - Oct 2007
This article by Communications scholar Celeste Condit describes the role of the media and scientists in communicating information about scientific advances in genetics to the general public; Condit also provides strategies for minimizing inaccurate and inappropriate coverage of scientific research results and/or basic concepts in human genetics (such as genetic determinism).

Bias in Reporting of Genetic Association Studies
PLoS Medicine - Dec 2005

Scientists’ and Science Writers’ Experiences Reporting Genetic Discoveries: Toward an Ethic of Trust in Science Journalism
Genetics in Medicine - Mar 2005

Do the Print Media “Hype” Genetic Research?
Canadian Medical Association Journal (CMAJ) - Apr 27, 2004

Science Reporting to the Public: Does the Message Get Twisted?
Canadian Medical Association Journal (CMAJ) - Apr 27, 2004

Media Representations of Genetic Discoveries: Hype in the Headlines?
Health Law Review - Mar 22, 2004

The Media and Public Reaction to Genetic Research
Medical Student JAMA (msJAMA) - Feb 13, 2002

Uses of Expertise: Sources, Quotes, and Voice in the Reporting of Genetics in the News
Public Understanding of Science - 1999

 


 

Reporting Genetics News – Guidelines & Resources for the Media:

 

U.K. Science Media Centre: “How Science Works” Leaflets – This series of printable information sheets lists effective ways of talking about scientific research information within the context of a media interview.

  • “Genetics in a Nutshell” (PDF) – This information sheet is designed to be used as a quick-reference guide for busy news desks, especially those that lack ready access to a science correspondent. This useful resource provides a clear explanation of some of the common terms that are used in news stories about medical genetics.

The American Medical Association (AMA) - AMA provides a wealth of genetics information, materials and resources that explain the basic science of genetics and describe how knowledge gained from research advances and discoveries in the field can be applied to general health care practice. Some genetics resources of interest to the media featured on the AMA Web site include the following:

University of Washington: “Resources for Scientists on Effective Communication and Writing in Public Health Genetics” – A series of resources for scientists on multidisciplinary writing and communication skills, including links to online information, journal articles and PDF files of helpful handouts with writing tips. Both scientists and members of the media will want to review the “Rules to Write By” guide for more helpful information about science writing.

Washington State Dept. of Health: “Genetics Education Plan: News Media” – Rapid advances in genetics and related medical applications have raised growing concerns about the resulting educational needs of key groups, which the Washington State Dept. of Health outlined and addressed in their genetics education plan. This specific excerpt from the plan describes the information needs, challenges and recommendations for educating the news media about genetics.

The National Institutes of Health, Office of Medical Applications of Research (NIH/OMAR): “Medicine in the Media: The Challenge of Reporting on Medical Research” – The NIH presents a free annual training opportunity for journalists to help them develop the ability to evaluate and report on medical research. The course curriculum and expert panelists create an intensive learning experience with hands-on application.

 


 

Glossaries/Definitions of Genetics Terms:

 

ASHG & 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.

National Human Genome Research Institute (NIH/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 basic scientific terms and concepts used in genetic research. Each term has information about its pronunciation, images and additional links to related terms.

Human Genome Project (HGP) Genetics Dictionary: “Genomics and Its Impact on Medicine and Society: A Primer” – This online glossary from the HGP Web site 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.

 


 

Basic Genetics Background Information & Resources:

 

Centers for Disease Control & Prevention (CDC), National Office of Public Health Genomics (NOPHG) – The CDC/NOPHG Web site provides a wealth of genetics information and resources for the general public, including:

The National Human Genome Research Institute (NIH/NHGRI) – The NHGRI Web site features a wealth of basic genetics education materials and other resources for the general public that are clearly written and easy to understand.

  • “Fact Sheets about Science” – This series of fact sheets explains complex genetic concepts and research techniques to a non-scientist audience.

  • “Genetics and Genomics for Patients and the Public” – This section of the NHGRI Web site features health information on basic genomic science, genetic disorders, family health history and other related topics that is written in a clear and straightforward manner.

  • “Issues in Genetics and Health” – This section of the NHGRI Web site provides a brief overview of the issues associated with genetic research and information, including topics such as: genetic discrimination, intellectual property and genomics, genetic testing, personalized medicine, as well as political, social/cultural, ethical and religious issues.

Genetic Alliance & ASHG: “Guide to Understanding Genetics” (June 2006) – A group of experts from Genetic Alliance and ASHG collaborated to draft this straightforward guide for the general public and health care providers. The guide covers basic background 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) – The GROW search engine is an online resource that optimizes the use of the web to provide health professionals and the public. The search engine features high quality information related to human genetics, with a particular focus on genetic medicine and health.

Genetic and Rare Diseases Information Center (GARD) – Established by NHGRI and the Office of Rare Diseases (ORD), GARD employs experienced information specialists to answer questions from the general public – including patients and their families, health care professionals and biomedical researchers.

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 disease risk and outcome.

The Human Genome Epidemiology Network (HuGENet™) – HuGENet™ is a global collaboration focused on assessing the impact of human genome variation on population health and how genetic information can be used to improve health and prevent disease. Since 2001, HuGENet™ has maintained a database of published, population-based epidemiologic studies of human genes from PubMed. The HuGE Navigator replaces earlier search tools and provides additional applications for use by researchers and the public.

University of Washington Center for Genomics & Health Resources – This Web site features a comprehensive series of fact sheets on genetics in public health and clinical practice, as well as a list of links to other online human genetics resources and information that is organized by subject area/topic.

WikiGenetics – This online encyclopedia was created in 2007 by Genetic Alliance to provide a source of credible and up-to-date information on human genetics for a non-scientist audience. The content on this site is generated (and constantly updated) by geneticists and members of lay advocacy groups.

 


 

Genetic Testing Information & Resources:

 

ASHG Position Statement on Direct-to-Consumer (DTC) Genetic Testing (Jan. 2007) – ASHG drafted this policy statement to set forth the basic principles and guidelines that should govern all health-related genetic tests that can be ordered directly by a consumer, and whose results are reported DTC without an independent health care provider.

The National Human Genome Research Institute (NIH/NHGRI) – The NHGRI Web site features a comprehensive “Overview of Genetic Testing” that provides information for health care providers and the general public on the implications and proper use of genetic tests.

U.S. Federal Trade Commission (FTC): “At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Perscription” – This consumer 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 at-home 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. For more information, see the Mayo Clinic article titled, “Genetic Testing: What to Expect.”

 

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