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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:
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CDC/NOPHG Report: “Genomics &
Public Health: Ethical, Legal & Social
Issues” (2003) – The “Information to
the Media” section on
page 56 of this report suggests that
scientists and health professionals
should serve as the media’s primary
source of accurate information on
genetics, to counterbalance the more
sensational reporting that frequently
occurs.
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CDC/NOPHG Presentation Slides:
“But How Do We Translate Advances in
Genomics into Population Health?”
(July 23, 2007)
Presenter: Muin J. Khoury, MD, PhD,
Director of the CDC/NOPHG,
ASHG Executive Board Member
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CDC/NOPHG Commentary from
Genetics in Medicine Journal:
“Challenges in Communicating Genetics, A
Public Health Approach” (May/June
2000)
Lead Author: Muin J. Khoury, MD, PhD,
Director of the CDC/NOPHG, ASHG
Executive Board Member
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.
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“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.
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“Fact Sheets about Science” – This
series of fact sheets explains complex
genetic concepts and research techniques
to a non-scientist audience.
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“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.
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“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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