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WHO GETS to KNOW? Genetics and Privacy MAKING BETTER BABIES

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WHO GETS to KNOW? Genetics and Privacy MAKING BETTER BABIES Our Genes / Our Choices VIEWER’S GUIDE TO THE TELEVISION SERIES WHO GETS TO KNOW? Genetics and Privacy MAKING BETTER BABIES Genetics and Reproduction GENES ON TRIAL Genetics, Behavior, and the Law Check out the Our Genes/Our Choices Web site for additional resources www.pbs.org/fredfriendly/ourgenes EDUCATIONAL MATERIALS PRODUCED BY www.amnh.org5 Dear Viewer, Introduction to It’s a brave new world. Almost every week the media report new applications for genetic testing and engineering. These discoveries offer expanding opportunities for great advances in the world of health, including disease prevention, early Our Genes/ detection, and development of effective treatments. But along with the benefits of genetic science come difficult eth- ical, legal, medical, and social dilemmas. How do we harness Our Choices the extraordinary potential of genetic science while ensuring that its power doesn’t produce disturbing consequences? Our Genes/Our Choices, a three-part Fred Friendly Seminars series for PBS, will engage the American public in a critically Whether you’re a student or teacher, a doctor or lawyer, a TABLE OF CONTENTS needed dialogue about the complex implications of this rap- parent or grandparent, genetic technologies are changing ORGANIZATIONS AND RESOURCES idly advancing field. your world. Our Genes/Our Choices is designed to engage This viewer’s guide and the other resources located on Americans in an essential dialogue about the implications of our Web site www.pbs.org/fredfriendly/ourgenes will help this new science for our health, our families, our laws, and I American Association for the Advancement About the 2 you to join us in broadening the dialogue nationwide our society.The project features a three-part television series of Science Fred Friendly Seminars through discussions and other activities. in which eminent panelists are asked to play roles in hypo- I American Health Decisions The challenging choices presented by genetic science thetical scenarios that are closely related to their own pro- Introduction to 3 affect everyone. We all need to deal with these issues, and we fessional lives.Program topics include privacy and access in I American Museum of Natural History Our Genes/Our Choices look forward to your participation in the conversation. the genomic age, evolving reproductive technologies, the I Columbia Scholastic Press Association use and abuse of genetic information, and genetics and jus- Could We? Essay on 4 tice. I Communities of Color & Genetics Policy The History of Genetics This viewer’s guide is designed to encourage dialogue Project and reflection about the issues raised in this series. The guide I Council for Responsible Genetics includes: Essay on Should We? 5 I Fresh Angles How to Think Ethically I Materials to review before watching the programs. Two essays provide viewers with information about the history I Geneforum WHO GETS TO KNOW? 6-9 and current capabilities of genetic technologies and strate- I Genetic Alliance About the gies for how to think ethically about genetic issues. These Genetics and Privacy materials also present a scientific and ethical context for I The Hastings Center the programs. I March of Dimes MAKING BETTER BABIES 10-13 Genetics and Reproduction Fred Friendly I A synopsis of the scenarios presented during each pro- I National Association of Women Judges gram as background information for the discussion leader. I National Coalition for Health Professional GENES ON TRIAL 14-17 I Suggested pre- and post-viewing questions for each pro- Education in Genetics Genetics, Behavior, and the Law Seminars gram to generate discussion about the issues and the pan- elists’ opinions, and to inspire questions of your own. Feel I National Conference of State Legislatures Real Stories and Extension Projects 18-19 free to alter them in any way that makes them more I National Society of Genetic Counselors For over 20 years, the Fred Friendly Seminars, winner of appropriate for your conversation. major broadcasting awards, have probed a broad spec- I National Video Resources Credits and Funders 20 I Strategies for expanding the discussion to encourage trum of knotty ethical, legal, and public policy issues using I Project Vote Smart viewers to think deeply about the broader issues raised by their distinctive Socratic dialogue format. Within this for- the program. I Woodrow Wilson National Fellowship mat, prominent Seminar participants ranging from Supreme Court Justices to former Presidents, scientists, I Real stories from genetic counselors that offer additional Foundation – Leadership Program for journalists, legislators, and CEOs are drawn into a situa- perspective on issues people are grappling with every Teachers tion that brings the issues down to a human scale. There is day. no room for rhetoric as the moderator moves these partic- I Extension projects to help continue the dialogue. ipants through a hypothetical story line, encouraging them For a complete list of our to struggle with dilemmas drawn from real life. As pan- organizations and resources, elists debate the issues, the viewers are drawn into the drama and likewise find themselves wrestling with the check out our Web site problems in all their complexity. www.pbs.org/fredfriendly/ourgenes 2 3 Could We? Should We? The History of Genetics By Michael Yudell and Dr. Rob DeSalle By Dr. Mary Ann Cutter How to Think Ethically American Museum of Natural History University of Colorado When Austrian monk Gregor Mendel’s mid-19th century the environmental consequences of altering the In the last thirty years, biologists have learned an allocation or distribution of resources. In the West, we experiments led to the discovery of the basic mecha- genomes of various plants and animals. As our skills extraordinary amount about the genetic code that tend to favor a system that allows people to be individ- nisms of heredity, the science of genetics was born and and knowledge grow, we need to think hard about deal- shapes mice and men. However, what we know pales ually free, yet responsible for certain societal outcomes humanity took its first small steps towards deciphering ing with such potential consequences. beside what we do not begin to understand, even as The challenge in any ethical discussion is to clarify these the genetic code. Mendel’s discoveries helped to set in There is no doubt, however, that genomic technolo- genetic technologies present us with an avalanche of appeals, noting how and where they are similar and dif- motion a golden age as scientists around the world gies will change our lives for the better. Comparative new possibilities. Fortunately, Western thought offers a ferent between and among those who have a stake in grappled with the biological underpinnings of heredity. genomics, which compares whole genome sequences longstanding tradition of ways to think about balancing the debate. Since then, the focus of scientific inquiry has moved from a range of organisms, will advance our under- private, public, and scientific priorities in an ethical way. from genetics—the study of individual genes and the standing of the natural world and the role genes play in Five Steps for Coming to an Ethical way traits pass between generations—to genomics— complex human diseases. Mice, for example, have Ethics Helps Determine the Best the study of an organism’s entire complement of DNA. many gene sequences identical to humans, yet gene Course of Action Decision Ethical questions are inherently complex. They’re becom- Today, the landscape is dominated by the Human function often differs. By comparing gene function Strategies for assessing information and value systems ing even more so as new genetic information confronts Genome Project, an international research consortium between mice and humans, or between humans and are provided below that you can use to evaluate the pan- and even threatens to overwhelm us. Some believe that it that completed the first draft of the human genome in other species, we will begin to unravel many genetic elists’ decisions. They can also guide you in making eth- June, 2000. The end product—the complete sequence of mysteries. Microarray technology, which enables scien- ical choices in your own life. is different from other kinds of medical data because of its all 3.1 billion base pairs of human DNA—unveils the tists to compare tens of thousands of genes at once, predictive power, making it psychologically and socially encrypted blueprint for human life in the form of our promises to unlock the genetic roots of diseases and to How to Talk About What’s Right or Good more threatening. Further, because genetic information genetic code. The trip from Mendel to molecules is a enhance our ability to treat them. The new field of phar- affects a whole family, it inevitably raises questions about continuing journey of scientific exploration combining macogenomics will usher in an era of personalized med- It’s helpful to start by thinking about how we understand confidentiality and responsibility. the “right” and the “good.” Generally speaking, those human ingenuity, persistence, and plain old luck. icine. Cancer patients, for example, will receive thera- The challenge, and the solution, lie in organizing all terms apply to actions and qualities that foster the inter- A century ago, no one could have predicted that in pies tailored to their specific conditions rather than the information, including the moral appeals of the ests of some or all of the parties involved, whether indi- such a short time scientists would begin to master the undergoing ineffective and debilitating treatments. stakeholders, in a way that results in a clear, concise, viduals, families, communities, institutions, or societies. DNA molecule itself. Molecular biologists are now There may even come a time when geneticists begin to careful argument or decision. The process involves the The terms “wrong” or “bad” apply to actions and quali- beginning to unravel the complex ways in which genes manipulate our genes to increase human life spans, cre- following steps: interact with each other and the environment to produce ating a veritable fountain of youth.
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