| Additional Resources
About Science + Literacy for Health: Human Genome
Literacy surveys continue to find that a large number of adults lack
the skills to bring meaning to much of what is written about science. This,
in effect, denies these adults access to vital information about their
health and well-being. To address this need, the American Association for
the Advancement of Science (AAAS) has developed a 2-year project to provide
low-literate adults with the background knowledge necessary to address
the social, ethical, and legal implications of the Human Genome Project.
With its Science + Literacy for Health: Human Genome Project, AAAS
used its existing network of adult education providers and volunteer science
and health professionals to pursue the following overall objectives: (1)
to develop new materials for adult literacy classes, including a high-interest
reading book, a short video providing background information on genetics,
a database of resources, and fact sheets to assist other organizations
and researchers in preparing easy-to-read materials about the Human Genome
Project, and (2) to develop and conduct a campaign to disseminate the materials
to libraries and community organizations carrying out literacy programs
throughout the United States.
To introduce the materials to low-literate adults, workshops using the
materials were conducted in Washington, DC, Baltimore, MD, Chicago, IL,
Miami, FL, and Cleveland, OH. In 1997, thousands each of the book and video,
both titled Your Genes, Your Choices, have been sent to literacy
educators, community colleges, church groups, libraries, and other organizations
around the country. In each workshop, a genetic counselor or other genetic
professional was present to answer questions and provide insight into genetic
research and issues. The entire book is also available on the Web at http://ehrweb.aaas.org/ehr/books/index.html
Our model for helping scientists communicate in simple language has impact
beyond classrooms and learning centers. Since not every poor reader is
enrolled in a literacy class, we developed a model that reaches out to
community groups providing health services. These groups have indicated
that easy-to-read materials on genetics are not only desirable but necessary;
indeed, the groups we worked with often received requests for information
on heredity and genetics. Your Genes, Your Choices enables medical
and scientific organizations to communicate more effectively with economically
disadvantaged populations, which often include a large number of individuals
with below average reading skills.
About this workshop guide
This Workshop Guide is intended for use with the book, Your
Genes, Your Choices: Exploring the Issues Raised by Genetic Research
and the accompanying video. The book contains brief chapters addressing
some of the ethical, legal, and social issues related to genetic research
and testing. Each of these issues can serve as the basis for an informational
program; or the contents of the book as a whole might be used to prompt
questions in a general question and answer session with an expert.
In this Guide, we have tried to give you some ideas for using these materials,
but we are sure you will think of other ways to use them also. The Guide
contains some ideas and suggestions for planning an informational program
around one or more sections of the book; or for using the materials in
the book with adult or young adult learners.
The book, Your Genes, Your Choices: Exploring the Issues
Raised by Genetic Research by Catherine Baker, was published by
the American Association for the Advancement of Science (AAAS), in 1997.
AAAS publication #97-3S. ISBN# 0-87168-601-5. The book, which includes
seven chapters, a glossary of genetic and scientific terms with which a
reader may be unfamiliar, and a bibliography, is 82 pages. An introductory
video, also titled, Your Genes, Your Choices, is nine
minutes and thirteen seconds, (9:13).
Planning and Conducting a Workshop
Written for a lay audience, Your Genes Your Choices, provides
accurate information about the Human Genome Project and genetic research
in an easy-to-read and understand style and format. Each chapter in the
book begins with a brief vignette, which introduces an issue within a human
story, and raises a question for the reader to think about as the basic
science and information are presented in the rest of the chapter. The nine
minute introductory video provides a brief overview and introduction to
the information in the book.
These materials should be useful with a wide range of individuals and groups.
There is broad interest among the general public about genetic research
and testing and the related social, ethical and legal issues. For increasing
numbers of individuals, there are medical and personal implications that
make access to this information even more vital. For example, parents,
or parents-to-be, who are faced with decisions relating to genetic anomalies,
often lack the informational resources to fully understand the issues they
face. Your Genes, Your Choices provides a tool for use with
such individuals. We hope the book will find its way into public libraries,
patient education libraries, and other settings where it can be made available
to such individuals.
The materials should also be useful to groups for both informational and
educational purposes. Because of the style in which it was written, the
book can be used both with members of the general public, and in educational
settings for both young adult and adults students. If you are a teacher
of high school students, or an adult basic education provider, especially
in a GED program, you may wish to use these materials with your students.
If you are in a public library or other community-based organization, you
may wish to plan an informational program for the public using these materials.
Choosing A Format for Your Program
Below are a few possible formats you might wish to use for your program;
you may decide on another. These formats were tested at the following partner
sites or in other Science + Literacy for Health programs. However you structure
the program, we suggest that you:
You might decide to have a group discussion of one or more of the issues
raised in the book.
Use the video as an introduction to the program, as it provides a brief
overview of the topic and issues.
Involve an expert. Because of the nature of the subject, and the types
of questions which are apt to surface, we suggest that you invite a knowledgeable
professional who can answer questions from the audience. This person could
also serve as the moderator, facilitator, or guest speaker.
Look at the list of Additional Resources for ideas and resources that may
Question/Answer Session with a Knowledgeable
You may decide to have a question/answer format with an invited speaker.
Keep the group small to allow for discussion.
Decide which chapters/issues will be discussed.
Make the book available to participants a few weeks before the program
so that they have time to read it.
Select a moderator to lead the group discussion.
We suggest that the moderator be knowledgeable about genetics, or that
an invited expert be available to answer questions.
Panel of Individuals
You might wish to convene a panel of individuals who can discuss these
issues knowledgeably. For example, a geneticist, a genetic counselor, a
lawyer who understands these issues, and an individual who has had genetic
testing and is willing to discuss the experience.
Copies of the book should be available to the audience before the program,
If the program is for the general public, a genetic counselor should be
able to answer many of the questions which might be asked. A geneticist,
or a health professional who is comfortable with these issues, might also
be willing to answer questions. See the section below on finding speakers.
Provide a moderator to introduce the speaker, and to facilitate the program.
Study Group or Class
You may have an existing group or class that wishes to study and discuss
these issues. Your Genes, Your Choices has been used successfully
both with members of the general public and with adult learners in adult
basic education/GED programs. Because it affects their health, adult learners
were very interested in learning more about this topic and had many questions.
You may also wish to use the materials with a high school class.
The content lends itself to group discussion. The introductory vignettes
at the beginning of each chapter describe a hypothetical situation which
raises one or more of the ethical, legal, or social issues, and provides
a context for discussion. The question posed at the end of each of these
stories, e.g., "If you were Priya, what would you do?" (p. 14) can be used
to begin the discussion. A similar question is posed at the end of each
introductory vignette in each chapter. A leader should be designated to
keep the discussion moving.
Be sure that the members of the panel can knowledgeably answer questions
from the audience. See the section below on finding speakers.
Provide copies of the book and other information to the panel members well
in advance of the program.
Have a moderator to facilitate the taking of questions from the audience.
If you are in an educational setting, you can use the book much as you
would other materials, working through it chapter by chapter with the class,
or selecting sections to supplement other materials. The questions in the
text can be used for both class discussion and written assignments. Use
the glossary to help students comprehend new terms. Introducing each chapter
by first reviewing new vocabulary may be helpful. Several of the web sites
listed below include hands-on experiments, lesson plans and other resources
and ideas which should be very helpful.
A list of additional resources you may find useful are included in this
guide. Check with your public library to see which of these resources they
might have; can get for you on inter-library loan; or can help you locate.
Be sure to check out the resources on the Web.
Finding a Scientist, Health Professional or Other
Contact your local hospital. If they do not have a genetic counselor, they
may be able to refer you to a facility that does. Or, they may suggest
a health professional that could help.
Contact a local physician. He or she may be able to tell you where patients
are referred for genetic testing and counseling, or may have other suggestions
Contact the local medical society for suggestions.
If you are in an area that has a large teaching hospital, they should be
able to help you locate a health professional, genetic counselor, or even
a scientist working in the area of genetics.
Contact your local library. They may have suggestions of agencies that
might be able to help you locate a speaker.
Examples of Questions Asked at Previous Workshops
This will give you some idea of the types of questions which were
asked by participants. You may wish to give this list to an invited speaker
ahead of time to help them anticipate the types of questions which might
be asked. Since many of the questions require medical knowledge to answer
accurately, you will either want to have someone on hand who can answer
such questions, or be able to refer the person to an appropriate source
for an answer.
Where do the genes used in the treatment of CF come from?
How is gene replacement therapy done?
Do twins, triplets run in families?
Can glaucoma be inherited?
Can cerebral palsy be inherited?
What causes Down’s syndrome?
What is Huntington’s disease? Where does it come from?
Does rheumatoid arthritis skip generations? Is there a cure for rheumatoid
Can DNA be used to determine the medical history of adoptees?
Is dyslexia inherited?
Are addictions inherited?
Is it true that most respiratory diseases like bronchitis and asthma are
How is the sickle cell trait passed on?
Should a person get genetic testing when they get pregnant?
What happens when people of different races have children?
How is blood type determined?
Who has access to the information in my medical records?
Where can you get genetic testing?
Where can you get genetic counseling?
How is cloning done?
Beginning to Plan Your Program
The first step in a successful program
is careful planning. You can begin to plan your program based on the book
and video, Your Genes, Your Choices, by answering the following