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Preface

About Science + Literacy for Health: Human Genome Project

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.

Introduction

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 Materials
 
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

Potential Audiences

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:

 Group Discussion   You might decide to have a group discussion of one or more of the issues raised in the book. Question/Answer Session with a Knowledgeable Expert   You may decide to have a question/answer format with an invited speaker. 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. 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.

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 Expert
 

  • 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 for you.
  • 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.
    •      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.