Our Genes / Our Choices VIEWER’S GUIDE TO THE TELEVISION SERIES

WHO GETS TO KNOW? and

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..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 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 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- 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 American Museum of Natural History Our Genes/Our Choices look forward to your participation in the conversation. the genomic age, evolving reproductive technologies, the Columbia Scholastic Press Association use and abuse of genetic information, and genetics and jus- Could We? Essay on 4 tice. 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 Council for Responsible Genetics includes: Essay on Should We? 5 Fresh Angles How to Think Ethically Materials to review before watching the programs. Two essays provide viewers with information about the history Geneforum WHO GETS TO KNOW? 6-9 and current capabilities of genetic technologies and strate- 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 The Hastings Center the programs. March of Dimes MAKING BETTER BABIES 10-13 Genetics and Reproduction Fred Friendly A synopsis of the scenarios presented during each pro- National Association of Women Judges gram as background information for the discussion leader. National Coalition for Health Professional GENES ON TRIAL 14-17 Seminars Suggested pre- and post-viewing questions for each pro- Education in Genetics Genetics, Behavior, and the Law gram to generate discussion about the issues and the pan- elists’ opinions, and to inspire questions of your own. Feel National Conference of State Legislatures Real Stories and Extension Projects 18-19 free to alter them in any way that makes them more 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- National Video Resources Credits and Funders 20 Strategies for expanding the discussion to encourage trum of knotty ethical, legal, and public policy issues using Project Vote Smart viewers to think deeply about the broader issues raised by their distinctive Socratic dialogue format. Within this for- the program. Woodrow Wilson National Fellowship mat, prominent Seminar participants ranging from Supreme Court Justices to former Presidents, scientists, 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- 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- 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 , 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 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. Finally, as we ties that impair those interests. Given the complexities of 1. Get the facts straight. One of the challenges of con- a multiplicity of outcomes. Having sequenced the sequence the genomes of more and more species, our the human condition, there is often more than one well- temporary genetics is dealing with the uncertainty of genome, we continue to gather and analyze information understanding of the tree of life and our place in the nat- reasoned course of action. information. about both human and non-human genomes at an ural world will deepen. In the history of Western ethics, there are at least five astonishing pace. This information is bringing about rad- At the outset of the 20th century, scientists began prominent ways—called ethical appeals—to talk about 2. Consider the stakeholders. Those with an interest ical changes in medicine, agriculture, and the study of developing technologies that would some day bring moral interests: in a conflict may be individuals, families, communi- our evolutionary heritage, that can alter the course of these remarkable advances into the realm of possibility. 1. In terms of the results or consequences of ties, institutions, or entire societies. human history. For example, by moving genes from a Contemplating the mechanisms and meaning of hered- actions – People should be able to give well-ground- 3. Isolate the major ethical conflict in order to move common soil bacteria into corn (Bt corn), geneticists ity, these scientists wondered, “Could we?” We could, ed explanations for why a certain action should or the debate along. have engineered plants that produce the bacteria’s natu- and we did. And the sequencing of the human genome should not be pursued. 4. Consider the likely options. It’s easy to assess the ral insecticide. Many believe that the insecticide protec- is another important milestone on the continuing road 2. In terms of a right or rights – In this context, a positions major stakeholders will probably assume; tion offered by this genetically modified corn reduces to understanding heredity. right is a claim to be treated in a certain way regard- try to come up with compromises as well. overall insecticide use and benefits the environment, the less of the consequences of doing so. 5. Be prepared to take an ethical position. Ask what farmer, and the consumer. Others worry that this Bt corn 3. In terms of respect for person – This means to should or should not be done, and clearly develop the could have a deleterious environmental impact. value and protect such conditions of personhood as The ability to manipulate DNA gives us the capabil- For the complete versions of these essays, which thinking behind your decision. life, bodily integrity, and the freedom to make choices. ity to do immense harm to ourselves and our environ- incorporate examples from the Our Genes/ In short, thinking ethically in a situation means organiz- ment, just as it holds out vast promise for improving 4. In terms of virtue, or moral character – A virtue ing the facts, values, conflicts, and options for resolution our lives in ways as yet unseen. Emerging technologies Our Choices television programs, please visit is a character trait, such as independence, ingenuity, in order to determine the best course of action. The may increase the potential for www.pbs.org/fredfriendly/ourgenes honesty, and compassion. In the West, we tend to process outlined above will enable you to take a position and the invasion of genetic privacy. Some worry about favor people whose actions reflect these virtues. that is informed by the situation in all its complexity—a 5. In terms of justice – Justice is the principle of fair necessity in the age of the genome. 4 5 PARTICIPANTS Pre- and Post-Viewing Questions Theme of Segment 2: This viewer’s guide divides the program into three It’s not clear who owns genetic information, segments, each with a specific theme. The questions nor how it should be safeguarded. MODERATOR are organized accordingly. To find a particular seg- ment on the videotape, begin by setting the counter Questions to consider before watching Segment 2 Arthur Miller, Professor, Harvard (from 16:09 to 38:55 on the videotape counter): Law School WhoGets to 00:00 when you first see the Fred Friendly logo. Then, fast forward to the section in which you are Your genome reveals an encyclopedia of informa- interested. tion about you and your extended family. With it PANELISTS comes the possibility of misuse by insurers and Stephen G. Breyer, Associate Justice, toKnow? Theme of Segment 1: employers. If you decided to have a genetic test, how could you control access to the results? What United States Supreme Court Genetic test results can have unintended kind of safeguards do you envision? Genetics and Privacy consequences. Harold P. Coxson, Jr., Attorney at In this part of the program, Justice Breyer says, “I Ogletree, Deakins, Nash, Smoak & Stewart Questions to consider before watching Segment 1 don’t see the difference between the genetic test specializing in workplace law and employment (from 00:00 to 16:09 on the videotape counter): for the child and all the other tests that they per- discrimination Suppose you’re considering being tested for form.” As you watch, think about what position you Christine M. Durham, Utah Supreme BRCA-1, a gene associated with some forms of might take on this issue. Court Justice and active member of the Einstein hereditary breast cancer. Your mother and aunt, After watching Segment 2: Institute for Science, Health, and the Courts Synopsis of Who Gets to Know? breast cancer survivors, urge you to have the test In this program’s hypothetical scenario, Arthur Miller leads so that you can take appropriate health measures. Artie is surprised when his physician, Dr. Denise Nancy L. Fisher, Medical Director for Quality the panel in an intense discussion that reveals the far-reach- But a colleague points out that a positive result— Rodgers, agrees that he has a right to privacy, but Improvement at Regence BlueShield; Clinical ing implications of genetic testing. Playing the role of Artie, and the possibility of a disabling illness—could tells him, “I can’t destroy your records.” In her Associate Professor of Pediatrics, University of position, what do you think you would do? What a middle-aged man who has lost several close relatives to jeopardize your chances for promotion if your Washington and a clinical geneticist do you think of Artie’s opinion that he has a right to colon cancer, he visits his doctor, who recommends that he employer learns of it. What should you do? Janice Goldwater, Executive Director of deal with the records as he sees fit? Who should undergo genetic screening that may reveal an increased Most cancers are caused by genetic mutations Adoptions Together control your records? risk of certain forms of cancer. Artie’s sister, role-played by acquired during a person’s lifetime. Sometimes In addition to obtaining the medical and educa- Congresswoman Louise Slaughter, says she would decline these mutations can be caused by environmental William Haseltine, Chairman and CEO, tional records of the child he is planning to adopt, Human Genome Sciences a screening because it might jeopardize her insurance cov- factors and other times they are inherited. In the erage. Artie goes ahead with the test, which does reveal a Artie wants the child to undergo genetic screening. case of inherited mutations, researchers can look for What do you think of this request? Would you feel Cynthia McFadden, Senior Legal genetic abnormality that links to an increased incidence of a genetic link when two first-degree relatives like a differently about a test that screened only for spe- Correspondent, ABC News developing cancer. What are the implications for Artie’s mother, father, sister, or brother have the same dis- cific serious diseases? What about a test conduct- physical and mental well-being? For his family members? Paul Steven Miller, Commissioner, U.S. ease. If this were the case in your family, what fac- ed after the adoption? Equal Employment Opportunity Commission Who controls access to the information? Whom should he tors would influence your decision whether to be As a candidate for an important government posi- tell? His fiancée? Once married, should they have children tested for the relevant genetic marker? While you tion, should Stephen Breyer undergo genetic screen- Denise V. Rodgers, Family Practitioner and together and risk passing on the gene? When they decide to watch, think about how you might feel if you were ing? Does the public have the need, or the right, to Associate Dean for Community Health, Robert adopt, are they justified in requesting that the child they are in Artie’s situation. How might genetic information know the genetic profiles of elected officials? Wood Johnson Medical School considering adopting be genetically screened? Does Artie’s affect your future outlook or behavior? Learning of the possible nomination of Artie’s Mark A. Rothstein, Chair of Law and genetic health reflect on his qualifications for fatherhood? brother, Stephen Breyer, to the Supreme Court, Medicine and Director, Institute for Bioethics, Is he entitled to test his employees? And will genetic priva- After watching Segment 1: journalist Cynthia McFadden queries him about Health Policy and Law, University of Louisville cy be a luxury that only those who can pay cash for their Dr. Nancy Wexler, role-playing a genetic counselor, the family’s medical problems. Should Cynthia School of Medicine test results enjoy? suggests the possibility that Artie could pay out-of- have swiped the judge’s napkin? Should she have pocket for his genetic testing so that the results it tested? Should she report her findings? Louise McIntosh Slaughter, Before You Watch the Program won’t be made available to his insurance compa- U.S. Representative (D-NY) and sponsor of Visit the Web site at www.pbs.org/fredfriendly/ourgenes, ny. The test is expensive. How does Artie balance Genetic Non-discrimination in Health Insurance where you can: the cost against the risk to his privacy? and Employment Act A genetic test is, and this is why people Take the “What Do You Know?” quiz to test your basic Genetic information has implications not only for the Nadine Strossen, President, American Civil are so concerned with genetics, an knowledge of genetics. individual being tested, but also for his or her entire Liberties Union and Professor of Law, New York family. Artie’s sister, played by Congresswoman attempt to look into some fuzzy crystal Law School Meet the Participants for background on the hosts, mod- Slaughter, says, “I’m afraid to know... [because] I’m “ erator, and panelists. ball and to make a guess about what Nancy S. Wexler, Professor of scared of what’s going to happen to that informa- Answer the Poll to compare your views on genetics with Neuropsychology, Columbia University and tion.” Should he tell her anyway? Who else might that future may be. – Paul Miller others’. President, Hereditary Disease Foundation think they have a right to know? 6 ” 7 Who Gets RESOURCES How Private Is My Medical Information? to Know?cont. Dr. Arthur Caplan raises the question Genetics and Privacy of in an article for Privacy Rights Clearinghouse, a nonprofit organization focused on consumer education, research, and advocacy. Theme of Segment 3: is dubious; he feels that genetic information is “too increased susceptibility to berylliosis, a degenerative lung http://www.privacyrights.org/fs/fs8-med.htm condition, caused by exposure to an element called berylli- Parents, insurers, employers, courts, and many other remote, too speculative.” After all, the person may um. Suppose you run a factory where beryllium is used. Are parties may seek access to genetic information— not develop the condition, or a cure may be found. Eugenics Image Archive Is the potential for discrimination greater when it you obligated to test your employees? What if some don’t sometimes for conflicting purposes. This site, developed by Cold Spring Harbor comes to genetic information because of its purely want to be tested and are willing to take the risk? What if Questions to consider before watching Segment 3 predictive nature? How does it differ from high some workers have the gene but want to stay in the job? Laboratories, explores the origins, flawed (from 38:55 on the videotape counter to the end): blood pressure and high cholesterol as predictors? Does the existence of the test reduce the traditional obliga- science, and social implications of eugenics tion of the employer to provide a safe workplace? Imagine if an insurance company chose to deny or Judge Durham points out that, “when people bring through text and images. limit coverage of a genetic condition. In turn, busi- a piece of litigation into the courts for resolution, Should the government be entrusted with establishing a http://www.eugenicsarchive.org/eugenics/ ness owners become concerned about keeping they are choosing a public forum for the resolution confidential genetic database of the population? Why or why premiums low. Suppose an employer offers you of those disputes.” What factors decide whether not? Genetics Legislation the job of your dreams on condition that you genetic information is relevant in a court of law? How can we protect both the privacy of the individual and This page, run by the , undergo genetic screening. Does she have the Does the appropriateness of a genetic test depend the sharing of information on which scientific progress provides up-to-date information on genetic right to ask? Think about what you would do in this on who would have access to the results? depends? situation. privacy legislation. http://www.ornl.gov/hgmis/elsi/legislat.html In this segment, a business owner whose compa- Expanding the Discussion ny is expanding wants to test prospective employ- ees for conditions that could reduce their term of Questions to help you grapple with the program’s issues National Cancer Institute productive employment, such as heart disease and in a broader context: The National Cancer Institute, a component certain cancers. Is that his prerogative? As genetic tests become more refined, scientists of the National Institutes of Health (NIH), Also in this segment, when a couple with two chil- will be able to determine how an organism’s You know, there’s a difference between conducts and supports research, training, genome responds to exposure to an ever-greater dren get divorced, the wife’s attorney plans to use what you have a right to do, health information dissemination, and other the results of her husband’s genetic test, indicating number of environmental toxins. This emerging programs with respect to the cause, diagnosis, that he has Huntington’s disease, in her custody field, called toxico-genomics, helps us understand and the right thing to do. suit. What do you think of that decision? the interaction between genes and the environ- “ prevention, and treatment of cancer. The site ment. If it becomes possible to determine that a – Cynthia McFadden has background information on the causes After watching Segment 3: certain group faces ten times the health risk of the and treatment of cancer, as well as NCI’s Equal Employment Opportunity Commissioner general population if exposed to a certain pesti- research programs. cide, does the government have a responsibility to ” Paul Miller says, “I can study hard and get better http://www.nci.nih.gov/ grades. There’s nothing I can do about that [a that population? If so, how should the issue be genetic test]. You are going to define me in a way addressed? that I get boxed in.” Do you agree with Miller? Is Individuals may seek information about their Once I write your medical record, there a difference between genetic information genetic make-up that members of their families or and the other kinds of personal and medical infor- communities emphatically wish to keep private. I can’t then go back and destroy mation a job candidate might be willing to provide Scientists or insurers may claim a legitimate need what I’ve written. For the complete list of Web, print, and a prospective employer? for access to genetic test results that the test sub- “ video resources, please visit Some say that genetic information falls under the jects maintain are theirs alone. Whom do you see – Denise Rodgers same privacy laws as other medical information. In as the principle stakeholders in the debate about www.pbs.org/fredfriendly/ourgenes his employer role, Artie is one of them; he feels he access to genetic information? Are multiple “fair” outcomes possible? ” has the right to any information that will help him assess an employee’s future performance. On the Up to 10 percent of the general population has a other hand, Artie’s partner, Attorney Harold Coxson, genetic marker that has been associated with 8 9 PARTICIPANTS

MODERATOR Pre- and Post-Viewing Questions Theme of Segment 2: John Hockenberry, Correspondent, This viewer’s guide divides the program into three Genetic tests reveal only probabilities, which make Dateline NBC segments, each with a specific theme. The questions decisions difficult. are organized accordingly. To find a particular seg- Making Questions to consider before watching Segment 2 PANELISTS ment on the videotape, begin by setting the counter to 00:00 when you first see the Fred Friendly logo. (from 19:04 to 32:16 on the videotape counter): Reverend Michael D. Anderson, Retired Then, fast forward to the section in which you are Suppose your sister and brother-in-law undergo Presbyterian Minister, and a member of the interested. genetic testing. The test reveals a 95 percent prob- Commission on Public Representation for the Better ability that their child will be born normal, but National Institutes of Health Theme of Segment 1: there is a 5 percent chance of severe mental and Adrienne Asch, Professor in Biology, Ethics The decision to undergo prenatal testing is physical handicaps. What advice do you think you and the Politics of Human Reproduction, complicated. would give them? If you were in their shoes, what Wellesley College Babies information might be helpful to you? Questions to consider before watching Segment 1 (from Barbara Bowles Biesecker, Director, Genetics and Reproduction Genetic Counseling Training Program, Johns 00:00 to 19:04 on the videotape counter): After watching Segment 2: Hopkins University/National Human Genome Every day, more and more genetic tests are avail- Genetic counselor Barbara Biesecker acknowl- Research Institute able to prospective parents. With the help of a edges to Lee and Meredith that “we actually don’t R. Alta Charo, Professor of Law and Medical genetic counselor, would you choose to screen have sufficient information or data to know what Ethics, University of Wisconsin at Madison your child for certain diseases? If it were possible, this is going to mean for the baby.” Should the would you like to learn about other traits or attrib- family doctor or genetic counselor present the par- Francis S. Collins, Director, National Synopsis of Making Better Babies utes the fetus might possess? ents with information if it is vague, even impre- Human Genome Research Institute cise? Could withholding it be justified? John Hockenberry moderates a scenario in which a couple In this scenario, a thirty-five-year old woman is Nancy L. Fisher, Medical Director for Quality learns that their baby could be born with serious genetic pregnant. Her obstetrician recommends an amnio- Training in genetics is only a small part of the Improvement at Regence BlueShield; Clinical defects. Meredith Vieira and Lee Silver are asked to play the centesis, a test that can screen the fetus for genetic ongoing education in which all doctors are Associate Professor of Pediatrics, University of roles of prospective parents. On the advice of her physi- defects. As you watch the episode, put yourself in required to participate. What responsibility do they Washington and a clinical geneticist cian, 35-year-old Meredith and her husband decide that the her position in that doctor’s office. How would you and other healthcare professionals have in helping Kevin T. FitzGerald, Jesuit Priest and Chair, fetus should be tested for genetic abnormalities using decide whether to have the test? families deal with the kinds of decisions growing Catholic Health Care Ethics, Georgetown amniocentesis. The test shows that the fetus has Turner’s out of these emerging reproductive technologies? University Medical Center, and a molecular syndrome, which affects only females and causes short After watching Segment 1: geneticist stature, infertility, and a greater risk of heart disease and Bioethicist Adrienne Asch presses molecular biolo- Rick Lazio, Former U.S. Representative (R-NY) diabetes. In a second scenario, the test gives a different gist Lee Silver and journalist Meredith Vieira to explain the nature of the difference between condi- Kathleen McAuliffe, Science and medical result; it shows a chromosomal inversion, which translates tions like asthma and Down’s syndrome, and writer into a 95 percent probability that the baby will be just fine— We say that knowledge is power, and a five percent chance of very severe disabilities. What strongly suggests that they want to have a “particu- Paul Steven Miller, Commissioner, U.S. should Meredith and Lee do? How can their decisions affect lar kind of child.” Is her charge justified? What about but knowledge also carries with Equal Employment Opportunity Commission their lives and their families? What kind of guidance can her concern about making society more accommo- it tough decisions and responsibilities Zev Rosenwaks, Director, The Center for they expect from doctors or genetic counselors? And what dating for all kinds of choices—and children— Reproductive Medicine and Infertility, New York choices will advances in technology— embryo screening, including those with serious genetic disorders? “ for making those decisions, Weill Cornell Medical Center even cloning— present to parents in the future? If you were Lee or Meredith, what would you want which I think frankly many people Lee M. Silver, Professor of Molecular to get out of your visit with the genetic counselor? find quite discomforting, Biology and Public Affairs, Princeton University Before You Watch the Program How do you think genetic information will change Visit the Web site at www.pbs.org/fredfriendly/ourgenes, Meredith Vieira, Co-Host, ABC’s The View the way that we make decisions about terminating and understandably so. where you can: a pregnancy or carrying it to term? How would the Faye Wattleton, President, Center for – risk factors and the severity of a possible genetic Gender Equality and past President, Planned Take the “What Do You Know?” quiz to test your basic disorder affect your decision? How relevant is the Parenthood knowledge of genetics. potential quality of life of the parents and extend- Meet the Participants for background on the hosts, mod- Nancy S. Wexler, Professor of ed family of a severely handicapped child? Neuropsychology, Columbia University and erator, and panelists. ” Who is entitled to assess the fetus’ potential quali- President, Hereditary Disease Foundation Answer the Poll to compare your views on genetics with ty of life? others’.

10 11 RESOURCES

Making Better Human Gene Testing An introduction to genetic testing by The Babies cont. National Academies of Science. This article Genetics and Reproduction takes a historical approach in describing the science and technology behind the use of genetic tests to detect genes that cause diseases. http://www.beyonddiscovery.org/content/ view.article.asp?a=239 Theme of Segment 3: What’s your opinion of Dr. Rosenwaks’ contention In 1994, Molly Nash was born with Fanconi anemia, an inher- that humans will never be commercially cloned? ited bone marrow disorder that kills most children by the age As reproductive technology advances, parents may Genetic Counseling If, however, this comes to pass, what do you think of seven. The only treatment is an infusion of healthy cells be able to enhance embryos in ways we can only the major social repercussions of human cloning from a perfectly matched sibling. Embryos from Molly’s par- In this introduction, Nancy Arnott provides now imagine. could be? ents were created by in vitro fertilization and then genetical- useful information for those who might be Questions to consider before watching Segment 3 (from ly screened. One of the embryos that tested free of Fanconi seeking genetic counseling. 32:16 to the end on the videotape counter): Expanding the Discussion and was a match for Molly was successfully implanted, and http://www.4woman.gov/editor/jul99/jul99. Adam Nash was born in August, 2000. Cells taken from his Reproductive technology is evolving at a dizzying htm Questions to help you grapple with the program’s issues umbilical cord were infused into Molly’s circulatory system, pace. With today’s technologies, we are able to in a broader context: raising her odds of survival by about 55 percent. What are the screen embryos for many abnormalities. How ethical issues involved with a child conceived for such a pur- American Civil Liberties Union would you feel if someone in your family decided Eugenics, which has been defined as the science of “improving human stock by giving more suitable pose? What kind of government oversight, if any, should The ACLU fights civil liberties violations to do this? What if some day technologies became races or strains of blood a better chance of prevail- exist for reproductive technologies? whenever and wherever they occur. The site available to screen for traits like height or musical ing speedily over the less suitable,” was popular ability? How would you feel if prospective parents has a number of sections with background around the world during the first half of the 20th screened for these types of traits? documents on issues, legislation updates, century. Many eugenists advocated breeding In this segment, a couple no longer able to con- restrictions along racial lines. Today such delin- ways to take action, and chat forums. ceive naturally is confronted with the possibility of eations might also fall along socioeconomic lines. I want to see my friends be the http://www.aclu.org/ cloning their beloved daughter, who was killed in a Will reproductive technologies and genetic best parents that they can be. car accident. If you were in their position, and were enhancements turn out to be “good preventative Medline: Amniocentesis assured that the procedure was medically safe, medicine” or a form of eugenics? I think that a child with a This NIH fact sheet provides information on what concerns and considerations might govern There are two kinds of cloning technologies: disability can be as gratifying a child the amniocentesis procedure, why it is done, your decision? reproductive cloning, which creates an embryo “ that grows into a genetic copy of the organism as any other child. But if they don’t, and what the results show. After watching Segment 3: from which the cell was taken, and therapeutic http://www.nlm.nih.gov/medlineplus/ency/ As Faye Wattleton, President of the Center for cloning, which creates an embryo from which stem that has to be the decision that article/003921.htm Gender Equality, reminds us in this part of the pro- cells are extracted and theoretically used to treat they make for all kinds of reasons. gram, choice is the essence of reproductive rights. conditions like Alzheimer’s or organ failure. If ther- In addition to screening your embryos for those apeutic cloning becomes a reality, what sorts of – Adrienne Asch most likely to be healthy, suppose the technology guidelines would be necessary? existed to screen for traits like resistance to certain Suppose a prenatal test reveals the presence of diseases. Arguing that it’s the parents’ responsibil- Down’s syndrome, but you decide to have the ity to provide their children with the best chance at baby. If the child needs surgery for an inner-ear ” success in life, your spouse is all in favor. How do problem to which people with Down’s syndrome you feel about trying to ensure the best traits for are susceptible, suppose your insurance compa- Reproductive rights, For the complete list of Web, print, your offspring? Would the fact that this option is ny eliminates his health coverage on the grounds the centrality of it, available only to those who can afford it affect your that his disability represents a pre-existing condi- and video resources, please visit decision? What responsibility does society have to tion of which you were aware—and one for which is that parents have options. www.pbs.org/fredfriendly/ourgenes those who can’t pay for such tests? you assumed responsibility. Are there legitimate “ grounds for them to do so? -Faye Wattleton

12 ” 13 PARTICIPANTS

Pre- and Post-Viewing Questions Theme of Segment 2: MODERATOR This viewer’s guide divides the program into three Behavior is complex, and is governed by both genet- Charles Ogletree, Professor, Harvard segments, each with a specific theme. The questions ic and environmental factors. Law School are organized accordingly. To find a particular seg- Genes ment on your videotape, begin by setting the count- Questions to consider before watching Segment 2 [19:44 er to 00:00 when you first see the Fred Friendly logo. to 28:25 on the videotape counter]: PANELISTS Then, fast forward to the section in which you are If you were a member of a population being used Evan Balaban, Head of Neurosciences interested. in a genetic study, how do you think greater knowl- Program, City University of New York on Trial edge of your genome would affect your perception Theme of Segment 1: of yourself? Would this depend on the nature of the Stephen G. Breyer, Associate Justice, Genetics, Behavior, Genetic information about a population carries both trait being studied? How might you use the infor- United States Supreme Court and the Law benefits and risks. mation to your group’s advantage? Johnnie L. Cochran, Jr., Defense Attorney Questions to consider before watching Segment 1 [00:00 After watching Segment 2: to 19:44 on the videotape counter]: Francis Collins, playing the role of a university sci- Francis S. Collins, Director, National Synopsis of Genes on Trial Human Genome Research Institute If you were a scientist interested in conducting a entist, states that study results show that Tracy In this program’s hypothetical scenario, moderated by study of a possible genetic basis for addiction to Islanders have an increased risk of addiction to Stanley Crouch, Columnist, New York Charles Ogletree, university researchers unwittingly find heroin, how would you select the participants? alcohol. Even though the research has “no imme- Daily News themselves navigating a cultural minefield when they How do you envision the results of your study diate clinical application,” journalists trumpet that David Goldman, Chief, Laboratory of embark on a study of the genetic basis of addiction to alco- being put to use? a “cure for alcoholism” is around the corner. How Neurogenetics, National Institute on Alcohol hol. Stanley Crouch and Karen Rothenberg are asked to As you watch, think about how you would respond might scientists and journalists facilitate more Abuse and Alcoholism play members of a family with a history of alcoholism on if you were asked to participate in a study of genet- accurate coverage of ongoing genetic research? both sides; their 21-year-old son, Joseph, has been seen What is the potential impact of inaccurate or sen- Colin Gracey, Chaplain, Northeastern ic susceptibility to alcohol addiction in your com- nipping into the champagne on Christmas morning. sational reporting of the research? University, and Board member, Council for munity. What factors might you consider in choos- Brother-in-law Dean Hamer, a geneticist, wants the family Responsible Genetics ing whether or not to participate? As a journalist, you get word of a study indicating to participate in a study of a genetic susceptibility to alco- that a particular group has a higher frequency (as Dean H. Hamer, Chief, Gene Structure hol addiction in Tracy Islanders, an immigrant group to After watching Segment 1: compared to the general population) of a gene and Regulation, National Cancer Institute which the family belongs. Somewhat reluctantly, the fami- Were Stanley and Karen under any moral obligation associated with addiction to heroin. What ques- Gwen Ifill, Moderator and Managing Editor, ly participates. The study does reveal a genetic marker to participate in a scientific study if the results could tions would you have for the scientists you inter- Washington Week in Review, PBS among Tracy Islanders; those who possess it have twice the yield health benefits for other members of their view? What story would you tell? What headline risk of becoming addicted to alcohol, but constitute only community? Are those same people under a moral would it run under? If the research were only pre- Patricia King, Professor of Law, Medicine, five percent of the Tracy Island population. More questions obligation not to participate because discrimination liminary, would you still run the story? Ethics and Public Policy, Georgetown arise when Joseph, drunk, kills a man by pushing him against their social group might result? Evan Balaban notes that “as scientists, we have University Law School through a bar window. Johnnie Cochran, role-playing conflicting interests. We have responsibilities to Joseph’s lawyer, argues that the gene has robbed Joseph of Should the interests of the Tracy Islanders have Alan H. McGowan, President, Gene communities [but we] always feel pressure to pro- his free will and thus he cannot be held responsible for his been better protected? If so, how, and by whom? Media Forum duce some kind of a result.” Can a study ever be deed, but the judge is skeptical. Should the family have par- What do you think of Barry Mehler’s point that the neutral? How can the interests of the various stake- Barry Mehler, Professor of History, Ferris ticipated in the study? How might the fact that the study incidence of alcoholism should not be addressed holders be reflected in the way the results are pre- State University, and Executive Director, reveals a genetic marker for addiction to alcohol among independent of environmental factors such as sented in the media? Institute for the Study of Academic Racism Tracy Islanders affect the individual Islander, the family, homelessness, reduced social services, and other Karen H. Rothenberg, Dean, and the community? How should genetic information affect stresses on recent immigrant populations? How University of Maryland School of Law, and the legal process? can scientists remain mindful of the social context past President, American Society of Law, in which their studies take place? Medicine and Ethics Before You Watch the Program Nadine Strossen, President, American Visit the Web site at www.pbs.org/fredfriendly/ourgenes, Civil Liberties Union and Professor of Law, where you can: I have to tell you folks, we have a history in this country of looking at New York Law School Take the “What Do You Know?” quiz to test your basic people’s genes to weed out the supposedly social undesirables. Victoria Toensing, Partner, diGenova and knowledge of genetics. Toensing law firm Meet the Participants for background on the hosts, mod- – Nadine Strossen erator, and panelists. “ Answer the Poll to compare your views on genetics with others’. 14 ” 15 RESOURCES

Genes Behavioral Genetics An introduction to behavioral genetics, on Trial cont. including methods used to study the genetics Genetics, Behavior, and the Law of behaviors and the implications of this field for society. http://www.ornl.gov/hgmis/elsi/behavior.html

Communities of Color and Genetics Policy Project The Communities of Color and Genetics Policy Project has developed a process Theme of Segment 3: can we balance the use of limited resources finish the triathlon in a dead heat. The lawyer for one main- for engaging communities of color of diverse tains that since his client—unlike her rival—does not possess Growing knowledge of the relation between between social and environmental programs and socio-economic levels in dialogues relating the genetic marker linked to endurance, she deserves the genes and behavior could alter our notion of biomedical treatments? to genome research. From these dialogues, medal for having overcome greater odds to achieve her goal. free will and responsibility under the law. the project developed recommendations Expanding the Discussion Is this relevant? Is it different from using drugs to enhance Questions to consider before watching Segment 3 performance? How do you think you would rule? for laws, professional standards, and [28:25 to the end on the videotape counter]: Questions to help you grapple with the program’s issues institutional policies regarding the use and Schizophrenia has a genetic component. The dis- in a broader context: application of genome research. ease can be managed with medications, but they Educational psychologist Arthur Jensen was con- http://www.sph.umich.edu/genpolicy/ have terrible side effects. Suppose you’re the judge vinced that intelligence is fundamentally an inher- presiding over the case of a young woman with a ited trait. In 1969, he published an article claiming Impact of Behavioral Genetics history of paranoid schizophrenia who voluntarily that African Americans’ lower scores on intelli- Galileo may have been subject on Law and the Courts went off her medication and subsequently killed a gence tests were due to inherent intellectual differ- An article by Mark Rothstein on the impact neighbor who came to check on her. Genetic tests to misunderstandings, but the solution wasn’t ences between “blacks and whites,” rather than to genetics will have on the judicial system. show that the defendant has the genetic marker for the effects of poverty, discrimination, and other to stop Galileo. So our idea here is that basically schizophrenia. Do you think this should be admit- http://www.ornl.gov/hgmis/publicat/judica- remediable factors. This was used to fuel argu- ted as evidence in the trial? Why or why not? we do go ahead with scientific research ture/article5.html ments against Head Start and affirmative action “ programs. If you were a scientist studying genetic when it’s going to help people. After watching Segment 3: National Institute of Alcohol influences on certain kinds of mental abilities, how Do you think defense attorney Johnnie Cochran’s Abuse and Alcoholism could you reduce the risks of the information being – Justice Stephen Breyer argument that a genetic predisposition has taken used to serve personal or political agendas? NIAAA supports and conducts biomedical away Joseph’s free will is a valid one? Should and behavioral research on the causes, Joseph therefore go unpunished? How about pros- The science of eugenics—the belief that traits like consequences, treatment, and prevention of ecutor Victoria Toensing’s counter-argument that “feeblemindedness,” criminality, or dwarfism ” alcoholism and alcohol-related problems. The such a susceptibility makes Joseph a danger to his could be eliminated from the gene pool through community? Should he therefore be incarcerated? selective breeding—gained widespread popularity site includes related publications, research, What are the implications for other people with in the U.S. in the early twentieth century. About I believe that there’s something inherent in what and links to additional organizations. this gene? Does society stand to gain or lose if thirty states enacted laws that resulted in approxi- it is that you’re actually studying that feeds into http://www.niaaa.nih.gov/ courts of law admit evidence about links between mately 30,000 allegedly mentally ill or mentally the question of the quality of the science. genes and individual behavior? retarded persons being involuntarily sterilized. Can “ Hypothetical journalist Brad Blueblood maintains you think of other examples when genetic infor- Of how good an answer you can hope to get. that since alcoholism is genetically predetermined, mation has been used to weed out or discriminate And there is a line somewhere that I think there’s no point in pouring money into treatment against genetic “undesirables?” Do you think this For the complete list of Web, print, programs. Yet treating many diseases requires not is more likely to happen as more detailed knowl- we have just crossed. and video resources, please visit just medical treatment but social measures like edge of the genome emerges? – Evan Balaban prevention and equal access to health care. How Suppose you sit on an Olympic court. Two athletes ” www.pbs.org/fredfriendly/ourgenes 16 17 REAL STORIES EXTENSION PROJECTS

By Caroline Lieber, M.S., CGC, Director, Human Genetics Program, Sarah Lawrence College The scenarios in Our Genes/Our Choices present only a Genetics in the News few of the many ways in which new genetic technolo- and Wendy R. Uhlmann, M.S., CGC, Coordinator, Medical Genetics Clinic, University of Michigan The field of genetics is evolving with extraordinary gies affect people’s lives. The two activities below sug- speed, generating new information, therapies, and the- gest other ways to think about how genetic informa- ories all the time. Fifteen years ago, expectant mothers tion affects both individuals and society at large. could undergo amniocentesis to be tested for a handful Every day genetic counseling presents people with geneticists who examined the child established that he of genetic conditions such as Down’s syndrome and Tay many difficult choices: whether to be tested, who had the physical features of Fragile X syndrome and How to Behave in a Brave New World Sachs disease. Genetic counselors can now request should have access to the results, and who has a recommended genetic testing. Results confirmed that Every day genetic technologies present people with screening for hundreds of conditions, and the list is voice in these decisions. Here are the stories of a few he had Fragile X syndrome, which is the most common wrenching dilemmas, like the ones you’ve seen in the growing fast. Likewise, the list of conditions in which families who have grappled with the complex implica- inherited cause of mental retardation. Fragile X syn- Our Genes/Our Choices programs. Often no easy genetics is known to play a significant role has expand- tions of genetic information. drome results from a gene mutation on the X chromo- answer presents itself, and any personal choice is likely ed to include schizophrenia, resistance to AIDS, and some and more often affects males, as they just have a to affect others. One of the keys to ethical thinking in some forms of cancer. Weighing a Parent’s Right Against single . these conditions is to consider all the parties who have But it’s often hard to understand the implications of a Child’s Since males receive their X chromosomes from something at stake, and to keep in mind that there are genetic information. Media coverage can be misleading, their mothers, the boy’s mother was informed that often many ways to arrive at a decision, as well as mul- as in the 1984 discovery of the BRCA-1 gene, which is A 35-year-old woman, the mother of a 10-year-old son strongly associated with a hereditary form of breast can- she was a carrier. This meant that not only was she at tiple resolutions. Dr. Mary Ann Cutter’s essay, “Should and an 8-year-old daughter, came to the genetics clinic cer. The news led many to fear that genetics was destiny, high risk of having another child with Fragile X syn- We?,” shows how you might structure your thinking in for counseling. Her father had been diagnosed in his despite the fact that this particular gene accounts for less drome, but that other relatives were at increased risk order to assess the different positions of all the stake- late forties with Huntington’s disease, a devastating holders involved. than five percent of breast cancer cases. of being carriers or being affected as well. The boy’s progressive neurological condition which shortens life The National Cancer Institute estimates that about 1 The public perception of new medical treatments is span and has no cure. Now that she was nearing the parents were relieved to have an explanation for their in 8 women in the United States will develop breast likewise susceptible to distortion. Nearly 40 years after typical age of onset for the disease, she wanted to find son’s behavior at last, and armed with this new cancer during her lifetime. Tests can screen for dysfunc- scientists discovered the gene that causes chronic out whether she was facing the same fate. knowledge they were better able to put appropriate tional forms of the BRCA-1 and BRCA-2 genes, which myelogenous leukemia, a drug called Gleevec came on The genetic counselor explained the relevant test- therapies in place. are associated with an increased chance of developing the market. Touted as a wonder drug, it did indeed ing guidelines, and they talked about how the results Genetic information often affects an entire extend- certain forms of breast cancer. But the implications of cause a remission of this dreadful disease in the vast majority of patients who took it. But the news also gave could affect the woman’s life decisions. A month later, ed family. The woman had three sisters, all of whom the test are far from clear-cut. Multiple genes play a role were at risk of being carriers and one of whom was in cancer; having the dysfunctional form of the gene rise to wildly unrealistic expectations that the cure for the woman completed the necessary evaluations, and other forms of cancer was around the corner. pregnant. Feeling strongly that her siblings should be in doesn’t mean you will absolutely get the disease, in proceeded with testing. Unfortunately, her test results Likewise, the use of stem cells and therapeutic a position to make informed decisions, she told them part because other genes play a role and in part came back positive. Since that meant that each of her cloning raises hopes of treating diseases from her son’s diagnosis. The question, “Why didn’t I know?” because personal habits and the environment are children had a 50 percent chance of inheriting the dis- important as well. Some individuals who have cancer- Parkinson's to heart disease, despite the fact that these reverberated up the family tree. Some family members ease, she requested that they too be tested. As a par- related forms of BRCA-1 and/or 2 do not go on to devel- technologies are unlikely to offer anything to the med- ent, she felt she had a right to this information and appreciated this information while others were angry. op breast cancer, and individuals who have healthy ical consumer for the foreseeable future. Nevertheless, wanted relief from the emotional burden of not know- The pregnant sister initially wanted nothing to do with forms of these two genes may still be at risk for breast media attention swirls around them, fueled by ethical ing what lay ahead for her kids. In the event that either the information, but later decided to be tested. It turned cancer. controversies and the science-fiction-like scenarios that one or both of them had the Huntington’s disease gene out that her fetus was positive for Fragile X syndrome. Suppose that 37-year-old Brenda works for a com- they may some day make possible. mutation, she wanted to be able to allocate her limited The sister continued the pregnancy, but was able to pany that offers free genetic screening for breast can- Choose one of the five conditions listed below and track financial resources accordingly. prepare psychologically for the birth of a boy with spe- cer. Her husband wants her to be tested. Her mother, media coverage over the past decade. List the mile- Since Huntington’s disease mainly affects adults cial needs. While genetic testing had made it possible to concerned about the possible repercussions for her and other family members, recommends against it. stones in understanding the genetic and environmental and childhood cases are rare, the testing guidelines diagnose the 3-year-old boy, the results had significant Brenda’s doctor recommends more frequent mammo- contribution to these conditions, or any others that are specify that individuals should make their own deci- implications for other family members as well. grams in the event of a positive result, while her gyne- of special interest. What are the implications for health sions about testing and be at least eighteen years of cologist recommends a radical mastectomy. policy, research funding, and medical treatments? age. Therefore, the genetic counselor declined the Should she have the test? mother’s request, also emphasizing that genetic test- asthma Who should have access to the results—and who ing of children is only performed when there is a med- obesity else might obtain them? ical benefit to the child. autism How could Brenda go about making her decision? heart disease How Does Genetic Information Affect For additional real stories and extension How should she evaluate her family history, and take alcoholism a Family? into account the opinion of close relatives and her projects, please visit doctor? A three-year-old boy was referred to the genetics clinic by his pediatrician. The boy was delayed in his devel- www.pbs.org/fredfriendly/ourgenes Make a list of all the possible stakeholders. See if opment and hyperactive, and his speech ability was you can convincingly argue the point of view of extremely limited. His parents had no idea why. The each. Can you figure out an outcome satisfactory to all? Can you arrive at multiple “fair“ outcomes? 18 19 Our Genes /Our Choices

Funding for the Our Genes/Our Choices viewer’s guide was provided by the National Science Foundation under Grant No. ESI-0087602. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the funder.

The educational materials, which include this Our Genes/Our Choices is a production of print guide and the accompanying Web site, Fred Friendly Seminars at Columbia were produced by the American Museum of University Graduate School of Journalism in Natural History. Ellen V. Futter, President. association with Thirteen/WNET New York.

Executive Producer: Caroline Nobel Executive Producer: Richard Kilberg Production Coordinator: Michael Broom Producers: Liz Norton Writer: Ashton Applewhite Mike DeWitt Science Content: Rob DeSalle, Ph.D., Writers: Jay Ward Brown and Michael Yudell, Joan I. Greco MPH Broadcast Director: Mark Ganguzza Print Design: Amanda Kavanagh, Executive Director: Barbara Margolis Ark Design Editorial Director: Ruth Friendly Art Direction and Outreach Director: Michelle Prince Web Design: Stephanie Fotiadis Thirteen/WNET Technical Director: Steve Gano Executive-in-Charge: Stephen Segaller Technical Developer: Drew Koning Science and Educational Advisor: Dennis Liu Photographs by: Don Purdue

This series is presented on PBS by Thirteen/WNET, New York

Support for the Our Genes/Our Choices project was provided by The Robert Wood Johnson Foundation, the Josiah Macy, Jr. Foundation, the National Human Genome Research Institute, the National Science Foundation, the Alfred P. Sloan Foundation, and the U.S. Department of Energy Office of Science.

Program Ordering Information Video Taping Rights Our Genes/Our Choices is available on Off-air taping rights for Our Genes/Our videocassette from: Choices are available to educators for one year following each broadcast release. Films for the Humanities and Sciences P.O. Box 2053 Princeton, NJ 08543-2053 Phone Toll-Free: Diane Bilello at 800/257-5126, ext. 8039 or Theresa Santiago at ext. 6113 (For further information on DVD format, please contact Diane or Theresa) Web site: www.films.com

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