5

Check out the Our Genes/Our ChoicesWeb site for additional resources www.pbs.org/fredfriendly/ourgenes

E D U C A T I O N A L M A T E R I A L S P R O D U C E D B Y

www.amnh.org

OurGenes/OurChoices

V I E W E R ’ S G U I D E T O T H E T E L E V I S I O N S E R I E S

WHO GETS TO KNOW?Genetics and Privacy

MAKING BETTER BABIESGenetics and Reproduction

GENES ON TRIALGenetics, Behavior, and the Law

■ American Association for the Advancement of Science

■ American Health Decisions

■ American Museum of Natural History

■ Columbia Scholastic Press Association

■ Communities of Color & Genetics PolicyProject

■ Council for Responsible Genetics

■ Fresh Angles

■ Geneforum

■ Genetic Alliance

■ The Hastings Center

■ March of Dimes

■ National Association of Women Judges

■ National Coalition for Health ProfessionalEducation in Genetics

■ National Conference of State Legislatures

■ National Society of Genetic Counselors

■ National Video Resources

■ Project Vote Smart

■ Woodrow Wilson National FellowshipFoundation – Leadership Program forTeachers

For over 20 years, the Fred Friendly Seminars, winner ofmajor broadcasting awards, have probed a broad spec-trum of knotty ethical, legal, and public policy issues usingtheir distinctive Socratic dialogue format. Within this for-mat, prominent Seminar participants ranging fromSupreme Court Justices to former Presidents, scientists,journalists, legislators, and CEOs are drawn into a situa-tion that brings the issues down to a human scale. There isno room for rhetoric as the moderator moves these partic-ipants through a hypothetical story line, encouraging themto struggle with dilemmas drawn from real life. As pan-elists debate the issues, the viewers are drawn into thedrama and likewise find themselves wrestling with theproblems in all their complexity.

Dear Viewer,It’s a brave new world. Almost every week the media reportnew applications for genetic testing and engineering. Thesediscoveries offer expanding opportunities for great advancesin the world of health, including disease prevention, earlydetection, and development of effective treatments. Butalong with the benefits of genetic science come difficult eth-ical, legal, medical, and social dilemmas. How do we harnessthe extraordinary potential of genetic science while ensuringthat its power doesn’t produce disturbing consequences?Our Genes/Our Choices, a three-part Fred Friendly Seminarsseries for PBS, will engage the American public in a criticallyneeded dialogue about the complex implications of this rap-idly advancing field.

This viewer’s guide and the other resources located onour Web site www.pbs.org/fredfriendly/ourgenes will helpyou to join us in broadening the dialogue nationwidethrough discussions and other activities.

The challenging choices presented by genetic scienceaffect everyone. We all need to deal with these issues, and welook forward to your participation in the conversation.

Whether you’re a student or teacher, a doctor or lawyer, aparent or grandparent, genetic technologies are changingyour world. Our Genes/Our Choices is designed to engageAmericans in an essential dialogue about the implications ofthis new science for our health, our families, our laws, andour society.The project features a three-part television seriesin which eminent panelists are asked to play roles in hypo-thetical scenarios that are closely related to their own pro-fessional lives.Program topics include privacy and access inthe genomic age, evolving reproductive technologies, theuse and abuse of genetic information, and genetics and jus-tice.

This viewer’s guide is designed to encourage dialogueand reflection about the issues raised in this series. The guideincludes:

■ Materials to review before watching the programs. Twoessays provide viewers with information about the historyand current capabilities of genetic technologies and strate-gies for how to think ethically about genetic issues. Thesematerials also present a scientific and ethical context forthe programs.

■ A synopsis of the scenarios presented during each pro-

gram as background information for the discussion leader.

■ Suggested pre- and post-viewing questions for each pro-

gram to generate discussion about the issues and the pan-elists’ opinions, and to inspire questions of your own. Feelfree to alter them in any way that makes them moreappropriate for your conversation.

■ Strategies for expanding the discussion to encourageviewers to think deeply about the broader issues raised bythe program.

■ Real stories from genetic counselors that offer additionalperspective on issues people are grappling with everyday.

■ Extension projects to help continue the dialogue.

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About the 2Fred Friendly Seminars

Introduction to 3Our Genes/Our Choices

Could We? Essay on 4The History of Genetics

Should We? Essay on 5How to Think Ethically

WHO GETS TO KNOW? 6-9Genetics and Privacy

MAKING BETTER BABIES 10-13Genetics and Reproduction

GENES ON TRIAL 14-17Genetics, Behavior, and the Law

Real Stories and Extension Projects 18-19

Credits and Funders 20

ORGANIZATIONS AND RESOURCEST A B L E O F C O N T E N T S

3

Introduction to

Our Genes/Our Choices

About the

Fred FriendlySeminars

For a complete list of our organizations and resources, check out our Web sitewww.pbs.org/fredfriendly/ourgenes

When Austrian monk Gregor Mendel’s mid-19th centuryexperiments led to the discovery of the basic mecha-nisms of heredity, the science of genetics was born andhumanity took its first small steps towards decipheringthe genetic code. Mendel’s discoveries helped to set inmotion a golden age as scientists around the worldgrappled with the biological underpinnings of heredity.

Since then, the focus of scientific inquiry has movedfrom genetics—the study of individual genes and theway traits pass between generations—to genomics—the study of an organism’s entire complement of DNA.Today, the landscape is dominated by the HumanGenome Project, an international research consortiumthat completed the first draft of the human genome inJune, 2000. The end product—the complete sequence ofall 3.1 billion base pairs of human DNA—unveils theencrypted blueprint for human life in the form of ourgenetic code. The trip from Mendel to molecules is acontinuing journey of scientific exploration combininghuman ingenuity, persistence, and plain old luck.

A century ago, no one could have predicted that insuch a short time scientists would begin to master theDNA molecule itself. Molecular biologists are nowbeginning to unravel the complex ways in which genesinteract with each other and the environment to producea multiplicity of outcomes. Having sequenced thegenome, we continue to gather and analyze informationabout both human and non-human genomes at anastonishing pace. This information is bringing about rad-ical changes in medicine, agriculture, and the study ofour evolutionary heritage, that can alter the course ofhuman history. For example, by moving genes from acommon soil bacteria into corn (Bt corn), geneticistshave engineered plants that produce the bacteria’s natu-ral insecticide. Many believe that the insecticide protec-tion offered by this genetically modified corn reducesoverall insecticide use and benefits the environment, thefarmer, and the consumer. Others worry that this Bt corncould have a deleterious environmental impact.

The ability to manipulate DNA gives us the capabil-ity to do immense harm to ourselves and our environ-ment, just as it holds out vast promise for improvingour lives in ways as yet unseen. Emerging technologiesmay increase the potential for genetic discriminationand the invasion of genetic privacy. Some worry about

the environmental consequences of altering thegenomes of various plants and animals. As our skillsand knowledge grow, we need to think hard about deal-ing with such potential consequences.

There is no doubt, however, that genomic technolo-gies will change our lives for the better. Comparativegenomics, which compares whole genome sequencesfrom a range of organisms, will advance our under-standing of the natural world and the role genes play incomplex human diseases. Mice, for example, havemany gene sequences identical to humans, yet genefunction often differs. By comparing gene functionbetween mice and humans, or between humans andother species, we will begin to unravel many geneticmysteries. Microarray technology, which enables scien-tists to compare tens of thousands of genes at once,promises to unlock the genetic roots of diseases and toenhance our ability to treat them. The new field of phar-macogenomics will usher in an era of personalized med-icine. Cancer patients, for example, will receive thera-pies tailored to their specific conditions rather thanundergoing ineffective and debilitating treatments.There may even come a time when geneticists begin tomanipulate our genes to increase human life spans, cre-ating a veritable fountain of youth. Finally, as wesequence the genomes of more and more species, ourunderstanding of the tree of life and our place in the nat-ural world will deepen.

At the outset of the 20th century, scientists begandeveloping technologies that would some day bringthese remarkable advances into the realm of possibility.Contemplating the mechanisms and meaning of hered-ity, these scientists wondered, “Could we?” We could,and we did. And the sequencing of the human genomeis another important milestone on the continuing roadto understanding heredity.

By Michael Yudell and Dr. Rob DeSalleAmerican Museum of Natural History

4 5

Could We?In the last thirty years, biologists have learned anextraordinary amount about the genetic code thatshapes mice and men. However, what we know palesbeside what we do not begin to understand, even asgenetic technologies present us with an avalanche ofnew possibilities. Fortunately, Western thought offers alongstanding tradition of ways to think about balancingprivate, public, and scientific priorities in an ethical way.

Ethics Helps Determine the BestCourse of ActionStrategies for assessing information and value systemsare provided below that you can use to evaluate the pan-elists’ decisions. They can also guide you in making eth-ical choices in your own life.

How to Talk About What’s Right or Good It’s helpful to start by thinking about how we understandthe “right” and the “good.” Generally speaking, thoseterms apply to actions and qualities that foster the inter-ests of some or all of the parties involved, whether indi-viduals, families, communities, institutions, or societies.The terms “wrong” or “bad” apply to actions and quali-ties that impair those interests. Given the complexities ofthe human condition, there is often more than one well-reasoned course of action.

In the history of Western ethics, there are at least fiveprominent ways—called ethical appeals—to talk aboutmoral interests:1. In terms of the results or consequences of

actions – People should be able to give well-ground-ed explanations for why a certain action should orshould not be pursued.

2. In terms of a right or rights – In this context, aright is a claim to be treated in a certain way regard-less of the consequences of doing so.

3. In terms of respect for person – This means tovalue and protect such conditions of personhood aslife, bodily integrity, and the freedom to make choices.

4. In terms of virtue, or moral character – A virtueis a character trait, such as independence, ingenuity,honesty, and compassion. In the West, we tend tofavor people whose actions reflect these virtues.

5. In terms of justice – Justice is the principle of fair

allocation or distribution of resources. In the West, wetend to favor a system that allows people to be individ-ually free, yet responsible for certain societal outcomes

The challenge in any ethical discussion is to clarify theseappeals, noting how and where they are similar and dif-ferent between and among those who have a stake inthe debate.

Five Steps for Coming to an EthicalDecisionEthical questions are inherently complex. They’re becom-ing even more so as new genetic information confrontsand even threatens to overwhelm us. Some believe that itis different from other kinds of medical data because of itspredictive power, making it psychologically and sociallymore threatening. Further, because genetic informationaffects a whole family, it inevitably raises questions aboutconfidentiality and responsibility.

The challenge, and the solution, lie in organizing allthe information, including the moral appeals of thestakeholders, in a way that results in a clear, concise,careful argument or decision. The process involves thefollowing steps:

1. Get the facts straight. One of the challenges of con-temporary genetics is dealing with the uncertainty ofinformation.

2. Consider the stakeholders. Those with an interestin a conflict may be individuals, families, communi-ties, institutions, or entire societies.

3. Isolate the major ethical conflict in order to movethe debate along.

4. Consider the likely options. It’s easy to assess thepositions major stakeholders will probably assume;try to come up with compromises as well.

5. Be prepared to take an ethical position. Ask whatshould or should not be done, and clearly develop thethinking behind your decision.

In short, thinking ethically in a situation means organiz-ing the facts, values, conflicts, and options for resolutionin order to determine the best course of action. Theprocess outlined above will enable you to take a positionthat is informed by the situation in all its complexity—anecessity in the age of the genome.

Should We?

For the complete versions of these essays, whichincorporate examples from the Our Genes/ Our Choices television programs, please visitwww.pbs.org/fredfriendly/ourgenes

How to Think EthicallyThe History of Genetics By Dr. Mary Ann CutterUniversity of Colorado

Synopsis of Who Gets to Know?In this program’s hypothetical scenario, Arthur Miller leadsthe panel in an intense discussion that reveals the far-reach-ing implications of genetic testing. Playing the role of Artie,a middle-aged man who has lost several close relatives tocolon cancer, he visits his doctor, who recommends that heundergo genetic screening that may reveal an increasedrisk of certain forms of cancer. Artie’s sister, role-played byCongresswoman Louise Slaughter, says she would declinea screening because it might jeopardize her insurance cov-erage. Artie goes ahead with the test, which does reveal agenetic abnormality that links to an increased incidence ofdeveloping cancer. What are the implications for Artie’sphysical and mental well-being? For his family members?Who controls access to the information? Whom should hetell? His fiancée? Once married, should they have childrentogether and risk passing on the gene? When they decide toadopt, are they justified in requesting that the child they areconsidering adopting be genetically screened? Does Artie’sgenetic health reflect on his qualifications for fatherhood?Is he entitled to test his employees? And will genetic priva-cy be a luxury that only those who can pay cash for theirtest results enjoy?

Before You Watch the ProgramVisit the Web site at www.pbs.org/fredfriendly/ourgenes,where you can:

■ Take the “What Do You Know?” quiz to test your basicknowledge of genetics.

■ Meet the Participants for background on the hosts, mod-erator, and panelists.

■ Answer the Poll to compare your views on genetics withothers’.

Pre- and Post-Viewing QuestionsThis viewer’s guide divides the program into threesegments, each with a specific theme. The questionsare organized accordingly. To find a particular seg-ment on the videotape, begin by setting the counterto 00:00 when you first see the Fred Friendly logo.Then, fast forward to the section in which you areinterested.

Theme of Segment 1: Genetic test results can have unintended

consequences.

Questions to consider before watching Segment 1 (from 00:00 to 16:09 on the videotape counter): ■ Suppose you’re considering being tested for

BRCA-1, a gene associated with some forms ofhereditary breast cancer. Your mother and aunt,breast cancer survivors, urge you to have the testso that you can take appropriate health measures.But a colleague points out that a positive result—and the possibility of a disabling illness—couldjeopardize your chances for promotion if youremployer learns of it. What should you do?

■ Most cancers are caused by genetic mutationsacquired during a person’s lifetime. Sometimesthese mutations can be caused by environmentalfactors and other times they are inherited. In thecase of inherited mutations, researchers can look fora genetic link when two first-degree relatives like amother, father, sister, or brother have the same dis-ease. If this were the case in your family, what fac-tors would influence your decision whether to betested for the relevant genetic marker? While youwatch, think about how you might feel if you werein Artie’s situation. How might genetic informationaffect your future outlook or behavior?

After watching Segment 1: ■ Dr. Nancy Wexler, role-playing a genetic counselor,

suggests the possibility that Artie could pay out-of-pocket for his genetic testing so that the resultswon’t be made available to his insurance compa-ny. The test is expensive. How does Artie balancethe cost against the risk to his privacy?

■ Genetic information has implications not only for theindividual being tested, but also for his or her entirefamily. Artie’s sister, played by CongresswomanSlaughter, says, “I’m afraid to know... [because] I’mscared of what’s going to happen to that informa-tion.” Should he tell her anyway? Who else mightthink they have a right to know?

Theme of Segment 2: It’s not clear who owns genetic information,

nor how it should be safeguarded.

Questions to consider before watching Segment 2(from 16:09 to 38:55 on the videotape counter): ■ Your genome reveals an encyclopedia of informa-

tion about you and your extended family. With itcomes the possibility of misuse by insurers andemployers. If you decided to have a genetic test,how could you control access to the results? Whatkind of safeguards do you envision?

■ In this part of the program, Justice Breyer says, “Idon’t see the difference between the genetic testfor the child and all the other tests that they per-form.” As you watch, think about what position youmight take on this issue.

After watching Segment 2: ■ Artie is surprised when his physician, Dr. Denise

Rodgers, agrees that he has a right to privacy, buttells him, “I can’t destroy your records.” In herposition, what do you think you would do? Whatdo you think of Artie’s opinion that he has a right todeal with the records as he sees fit? Who shouldcontrol your records?

■ In addition to obtaining the medical and educa-tional records of the child he is planning to adopt,Artie wants the child to undergo genetic screening.What do you think of this request? Would you feeldifferently about a test that screened only for spe-cific serious diseases? What about a test conduct-ed after the adoption?

■ As a candidate for an important government posi-tion, should Stephen Breyer undergo genetic screen-ing? Does the public have the need, or the right, toknow the genetic profiles of elected officials?

■ Learning of the possible nomination of Artie’sbrother, Stephen Breyer, to the Supreme Court,journalist Cynthia McFadden queries him aboutthe family’s medical problems. Should Cynthiahave swiped the judge’s napkin? Should she haveit tested? Should she report her findings?

M O D E R A T O R

Arthur Miller, Professor, Harvard Law School

P A N E L I S T S

Stephen G. Breyer, Associate Justice, United States Supreme Court

Harold P. Coxson, Jr., Attorney atOgletree, Deakins, Nash, Smoak & Stewart specializing in workplace law and employmentdiscrimination

Christine M. Durham, Utah SupremeCourt Justice and active member of the EinsteinInstitute for Science, Health, and the Courts

Nancy L. Fisher, Medical Director for QualityImprovement at Regence BlueShield; ClinicalAssociate Professor of Pediatrics, University ofWashington and a clinical geneticist

Janice Goldwater, Executive Director ofAdoptions Together

William Haseltine, Chairman and CEO,Human Genome Sciences

Cynthia McFadden, Senior LegalCorrespondent, ABC News

Paul Steven Miller, Commissioner, U.S.Equal Employment Opportunity Commission

Denise V. Rodgers, Family Practitioner andAssociate Dean for Community Health, RobertWood Johnson Medical School

Mark A. Rothstein, Chair of Law andMedicine and Director, Institute for Bioethics,Health Policy and Law, University of LouisvilleSchool of Medicine

Louise McIntosh Slaughter, U.S. Representative (D-NY) and sponsor ofGenetic Non-discrimination in Health Insuranceand Employment Act

Nadine Strossen, President, American CivilLiberties Union and Professor of Law, New YorkLaw School

Nancy S. Wexler, Professor ofNeuropsychology, Columbia University andPresident, Hereditary Disease Foundation

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P A R T I C I P A N T S

6

WhoGets toKnow?

Genetics and Privacy

A genetic test is, and this is why peopleare so concerned with genetics, an

attempt to look into some fuzzy crystalball and to make a guess about what

that future may be. – Paul Miller

“”

How Private Is My MedicalInformation?Dr. Arthur Caplan raises the question of medical privacy in an article for PrivacyRights Clearinghouse, a nonprofit organizationfocused on consumer education, research,and advocacy.http://www.privacyrights.org/fs/fs8-med.htm

Eugenics Image ArchiveThis site, developed by Cold Spring HarborLaboratories, explores the origins, flawed science, and social implications of eugenicsthrough text and images.http://www.eugenicsarchive.org/eugenics/

Genetics Legislation This page, run by the Human Genome Project,provides up-to-date information on genetic privacy legislation.http://www.ornl.gov/hgmis/elsi/legislat.html

National Cancer InstituteThe National Cancer Institute, a component of the National Institutes of Health (NIH), conducts and supports research, training,health information dissemination, and otherprograms with respect to the cause, diagnosis,prevention, and treatment of cancer. The sitehas background information on the causesand treatment of cancer, as well as NCI’sresearch programs.http://www.nci.nih.gov/

8

increased susceptibility to berylliosis, a degenerative lungcondition, caused by exposure to an element called berylli-um. Suppose you run a factory where beryllium is used. Areyou obligated to test your employees? What if some don’twant to be tested and are willing to take the risk? What ifsome workers have the gene but want to stay in the job?Does the existence of the test reduce the traditional obliga-tion of the employer to provide a safe workplace?

■ Should the government be entrusted with establishing aconfidential genetic database of the population? Why or whynot?

■ How can we protect both the privacy of the individual andthe sharing of information on which scientific progressdepends?

Theme of Segment 3: Parents, insurers, employers, courts, and many other

parties may seek access to genetic information—

sometimes for conflicting purposes.

Questions to consider before watching Segment 3(from 38:55 on the videotape counter to the end):■ Imagine if an insurance company chose to deny or

limit coverage of a genetic condition. In turn, busi-ness owners become concerned about keepingpremiums low. Suppose an employer offers youthe job of your dreams on condition that youundergo genetic screening. Does she have theright to ask? Think about what you would do in thissituation.

■ In this segment, a business owner whose compa-ny is expanding wants to test prospective employ-ees for conditions that could reduce their term ofproductive employment, such as heart disease andcertain cancers. Is that his prerogative?

■ Also in this segment, when a couple with two chil-dren get divorced, the wife’s attorney plans to usethe results of her husband’s genetic test, indicatingthat he has Huntington’s disease, in her custodysuit. What do you think of that decision?

After watching Segment 3: ■ Equal Employment Opportunity Commissioner

Paul Miller says, “I can study hard and get bettergrades. There’s nothing I can do about that [agenetic test]. You are going to define me in a waythat I get boxed in.” Do you agree with Miller? Isthere a difference between genetic informationand the other kinds of personal and medical infor-mation a job candidate might be willing to providea prospective employer?

■ Some say that genetic information falls under thesame privacy laws as other medical information. Inhis employer role, Artie is one of them; he feels hehas the right to any information that will help himassess an employee’s future performance. On theother hand, Artie’s partner, Attorney Harold Coxson,

is dubious; he feels that genetic information is “tooremote, too speculative.” After all, the person maynot develop the condition, or a cure may be found.Is the potential for discrimination greater when itcomes to genetic information because of its purelypredictive nature? How does it differ from highblood pressure and high cholesterol as predictors?

■ Judge Durham points out that, “when people bringa piece of litigation into the courts for resolution,they are choosing a public forum for the resolutionof those disputes.” What factors decide whethergenetic information is relevant in a court of law?

■ Does the appropriateness of a genetic test dependon who would have access to the results?

Expanding the Discussion

Questions to help you grapple with the program’s issuesin a broader context:■ As genetic tests become more refined, scientists

will be able to determine how an organism’sgenome responds to exposure to an ever-greaternumber of environmental toxins. This emergingfield, called toxico-genomics, helps us understandthe interaction between genes and the environ-ment. If it becomes possible to determine that acertain group faces ten times the health risk of thegeneral population if exposed to a certain pesti-cide, does the government have a responsibility tothat population? If so, how should the issue beaddressed?

■ Individuals may seek information about theirgenetic make-up that members of their families orcommunities emphatically wish to keep private.Scientists or insurers may claim a legitimate needfor access to genetic test results that the test sub-jects maintain are theirs alone. Whom do you seeas the principle stakeholders in the debate aboutaccess to genetic information? Are multiple “fair”outcomes possible?

■ Up to 10 percent of the general population has agenetic marker that has been associated with

Who Gets to Know?cont.

Genetics and Privacy

R E S O U R C E S

For the complete list of Web, print, andvideo resources, please visitwww.pbs.org/fredfriendly/ourgenes

9

Once I write your medical record, I can’t then go back and destroy

what I’ve written.

– Denise Rodgers

“ ”

You know, there’s a difference betweenwhat you have a right to do,

and the right thing to do.

– Cynthia McFadden

“ ”

Synopsis of Making Better BabiesJohn Hockenberry moderates a scenario in which a couplelearns that their baby could be born with serious geneticdefects. Meredith Vieira and Lee Silver are asked to play theroles of prospective parents. On the advice of her physi-cian, 35-year-old Meredith and her husband decide that thefetus should be tested for genetic abnormalities usingamniocentesis. The test shows that the fetus has Turner’ssyndrome, which affects only females and causes shortstature, infertility, and a greater risk of heart disease anddiabetes. In a second scenario, the test gives a differentresult; it shows a chromosomal inversion, which translatesinto a 95 percent probability that the baby will be just fine—and a five percent chance of very severe disabilities. Whatshould Meredith and Lee do? How can their decisions affecttheir lives and their families? What kind of guidance canthey expect from doctors or genetic counselors? And whatchoices will advances in technology— embryo screening,even cloning— present to parents in the future?

Before You Watch the ProgramVisit the Web site at www.pbs.org/fredfriendly/ourgenes,where you can:

■ Take the “What Do You Know?” quiz to test your basicknowledge of genetics.

■ Meet the Participants for background on the hosts, mod-erator, and panelists.

■ Answer the Poll to compare your views on genetics withothers’.

Pre- and Post-Viewing QuestionsThis viewer’s guide divides the program into threesegments, each with a specific theme. The questionsare organized accordingly. To find a particular seg-ment on the videotape, begin by setting the counterto 00:00 when you first see the Fred Friendly logo.Then, fast forward to the section in which you areinterested.

Theme of Segment 1: The decision to undergo prenatal testing is

complicated.

Questions to consider before watching Segment 1 (from00:00 to 19:04 on the videotape counter): ■ Every day, more and more genetic tests are avail-

able to prospective parents. With the help of agenetic counselor, would you choose to screenyour child for certain diseases? If it were possible,would you like to learn about other traits or attrib-utes the fetus might possess?

■ In this scenario, a thirty-five-year old woman ispregnant. Her obstetrician recommends an amnio-centesis, a test that can screen the fetus for geneticdefects. As you watch the episode, put yourself inher position in that doctor’s office. How would youdecide whether to have the test?

After watching Segment 1:■ Bioethicist Adrienne Asch presses molecular biolo-

gist Lee Silver and journalist Meredith Vieira toexplain the nature of the difference between condi-tions like asthma and Down’s syndrome, andstrongly suggests that they want to have a “particu-lar kind of child.” Is her charge justified? What abouther concern about making society more accommo-dating for all kinds of choices—and children—including those with serious genetic disorders?

■ If you were Lee or Meredith, what would you wantto get out of your visit with the genetic counselor?

■ How do you think genetic information will changethe way that we make decisions about terminatinga pregnancy or carrying it to term? How would therisk factors and the severity of a possible geneticdisorder affect your decision? How relevant is thepotential quality of life of the parents and extend-ed family of a severely handicapped child?

■ Who is entitled to assess the fetus’ potential quali-ty of life?

Theme of Segment 2: Genetic tests reveal only probabilities, which make

decisions difficult.

Questions to consider before watching Segment 2(from 19:04 to 32:16 on the videotape counter): ■ Suppose your sister and brother-in-law undergo

genetic testing. The test reveals a 95 percent prob-ability that their child will be born normal, butthere is a 5 percent chance of severe mental andphysical handicaps. What advice do you think youwould give them? If you were in their shoes, whatinformation might be helpful to you?

After watching Segment 2: ■ Genetic counselor Barbara Biesecker acknowl-

edges to Lee and Meredith that “we actually don’thave sufficient information or data to know whatthis is going to mean for the baby.” Should thefamily doctor or genetic counselor present the par-ents with information if it is vague, even impre-cise? Could withholding it be justified?

■ Training in genetics is only a small part of theongoing education in which all doctors arerequired to participate. What responsibility do theyand other healthcare professionals have in helpingfamilies deal with the kinds of decisions growingout of these emerging reproductive technologies?

M O D E R A T O RJohn Hockenberry, Correspondent,Dateline NBC

P A N E L I S T S

Reverend Michael D. Anderson, RetiredPresbyterian Minister, and a member of theCommission on Public Representation for theNational Institutes of Health

Adrienne Asch, Professor in Biology, Ethicsand the Politics of Human Reproduction,Wellesley College

Barbara Bowles Biesecker, Director,Genetic Counseling Training Program, JohnsHopkins University/National Human GenomeResearch Institute

R. Alta Charo, Professor of Law and MedicalEthics, University of Wisconsin at Madison

Francis S. Collins, Director, NationalHuman Genome Research Institute

Nancy L. Fisher, Medical Director for QualityImprovement at Regence BlueShield; ClinicalAssociate Professor of Pediatrics, University ofWashington and a clinical geneticist

Kevin T. FitzGerald, Jesuit Priest and Chair,Catholic Health Care Ethics, GeorgetownUniversity Medical Center, and a moleculargeneticist

Rick Lazio, Former U.S. Representative (R-NY)

Kathleen McAuliffe, Science and medicalwriter

Paul Steven Miller, Commissioner, U.S.Equal Employment Opportunity Commission

Zev Rosenwaks, Director, The Center forReproductive Medicine and Infertility, New YorkWeill Cornell Medical Center

Lee M. Silver, Professor of MolecularBiology and Public Affairs, Princeton University

Meredith Vieira, Co-Host, ABC’s The View

Faye Wattleton, President, Center forGender Equality and past President, PlannedParenthood

Nancy S. Wexler, Professor ofNeuropsychology, Columbia University andPresident, Hereditary Disease Foundation

P A R T I C I P A N T S

10 11

We say that knowledge is power, but knowledge also carries with

it tough decisions and responsibilitiesfor making those decisions,

which I think frankly many peoplefind quite discomforting, and understandably so.

– Francis Collins

“”

Making Better

BabiesGenetics and Reproduction

12 13

Human Gene TestingAn introduction to genetic testing by TheNational Academies of Science. This articletakes a historical approach in describingthe science and technology behind the useof genetic tests to detect genes that causediseases.http://www.beyonddiscovery.org/content/view.article.asp?a=239

Genetic CounselingIn this introduction, Nancy Arnott providesuseful information for those who might beseeking genetic counseling.http://www.4woman.gov/editor/jul99/jul99.htm

American Civil Liberties UnionThe ACLU fights civil liberties violationswhenever and wherever they occur. The sitehas a number of sections with backgrounddocuments on issues, legislation updates,ways to take action, and chat forums.http://www.aclu.org/

Medline: AmniocentesisThis NIH fact sheet provides information onthe amniocentesis procedure, why it is done,and what the results show.http://www.nlm.nih.gov/medlineplus/ency/article/003921.htm

■ In 1994, Molly Nash was born with Fanconi anemia, an inher-ited bone marrow disorder that kills most children by the ageof seven. The only treatment is an infusion of healthy cellsfrom a perfectly matched sibling. Embryos from Molly’s par-ents were created by in vitro fertilization and then genetical-ly screened. One of the embryos that tested free of Fanconiand was a match for Molly was successfully implanted, andAdam Nash was born in August, 2000. Cells taken from hisumbilical cord were infused into Molly’s circulatory system,raising her odds of survival by about 55 percent. What are theethical issues involved with a child conceived for such a pur-pose? What kind of government oversight, if any, shouldexist for reproductive technologies?

Theme of Segment 3: As reproductive technology advances, parents may

be able to enhance embryos in ways we can only

now imagine.

Questions to consider before watching Segment 3 (from32:16 to the end on the videotape counter):■ Reproductive technology is evolving at a dizzying

pace. With today’s technologies, we are able toscreen embryos for many abnormalities. Howwould you feel if someone in your family decidedto do this? What if some day technologies becameavailable to screen for traits like height or musicalability? How would you feel if prospective parentsscreened for these types of traits?

■ In this segment, a couple no longer able to con-ceive naturally is confronted with the possibility ofcloning their beloved daughter, who was killed in acar accident. If you were in their position, and wereassured that the procedure was medically safe,what concerns and considerations might governyour decision?

After watching Segment 3: ■ As Faye Wattleton, President of the Center for

Gender Equality, reminds us in this part of the pro-gram, choice is the essence of reproductive rights.In addition to screening your embryos for thosemost likely to be healthy, suppose the technologyexisted to screen for traits like resistance to certaindiseases. Arguing that it’s the parents’ responsibil-ity to provide their children with the best chance atsuccess in life, your spouse is all in favor. How doyou feel about trying to ensure the best traits foryour offspring? Would the fact that this option isavailable only to those who can afford it affect yourdecision? What responsibility does society have tothose who can’t pay for such tests?

■ What’s your opinion of Dr. Rosenwaks’ contentionthat humans will never be commercially cloned?If, however, this comes to pass, what do you thinkthe major social repercussions of human cloningcould be?

Expanding the Discussion

Questions to help you grapple with the program’s issuesin a broader context:■ Eugenics, which has been defined as the science of

“improving human stock by giving more suitableraces or strains of blood a better chance of prevail-ing speedily over the less suitable,” was populararound the world during the first half of the 20thcentury. Many eugenists advocated breedingrestrictions along racial lines. Today such delin-eations might also fall along socioeconomic lines.Will reproductive technologies and geneticenhancements turn out to be “good preventativemedicine” or a form of eugenics?

■ There are two kinds of cloning technologies:reproductive cloning, which creates an embryothat grows into a genetic copy of the organismfrom which the cell was taken, and therapeuticcloning, which creates an embryo from which stemcells are extracted and theoretically used to treatconditions like Alzheimer’s or organ failure. If ther-apeutic cloning becomes a reality, what sorts ofguidelines would be necessary?

■ Suppose a prenatal test reveals the presence ofDown’s syndrome, but you decide to have thebaby. If the child needs surgery for an inner-earproblem to which people with Down’s syndromeare susceptible, suppose your insurance compa-ny eliminates his health coverage on the groundsthat his disability represents a pre-existing condi-tion of which you were aware—and one for whichyou assumed responsibility. Are there legitimategrounds for them to do so?

Making BetterBabies cont.

Genetics and Reproduction

R E S O U R C E S

For the complete list of Web, print,and video resources, please visitwww.pbs.org/fredfriendly/ourgenes

I want to see my friends be the best parents that they can be.

I think that a child with a disability can be as gratifying a child

as any other child. But if they don’t, that has to be the decision that

they make for all kinds of reasons.

– Adrienne Asch

“”

Reproductive rights, the centrality of it,

is that parents have options.

-Faye Wattleton

“ ”

Synopsis of Genes on TrialIn this program’s hypothetical scenario, moderated byCharles Ogletree, university researchers unwittingly findthemselves navigating a cultural minefield when theyembark on a study of the genetic basis of addiction to alco-hol. Stanley Crouch and Karen Rothenberg are asked toplay members of a family with a history of alcoholism onboth sides; their 21-year-old son, Joseph, has been seennipping into the champagne on Christmas morning.Brother-in-law Dean Hamer, a geneticist, wants the familyto participate in a study of a genetic susceptibility to alco-hol addiction in Tracy Islanders, an immigrant group towhich the family belongs. Somewhat reluctantly, the fami-ly participates. The study does reveal a genetic markeramong Tracy Islanders; those who possess it have twice therisk of becoming addicted to alcohol, but constitute onlyfive percent of the Tracy Island population. More questionsarise when Joseph, drunk, kills a man by pushing himthrough a bar window. Johnnie Cochran, role-playingJoseph’s lawyer, argues that the gene has robbed Joseph ofhis free will and thus he cannot be held responsible for hisdeed, but the judge is skeptical. Should the family have par-ticipated in the study? How might the fact that the studyreveals a genetic marker for addiction to alcohol amongTracy Islanders affect the individual Islander, the family,and the community? How should genetic information affectthe legal process?

Before You Watch the ProgramVisit the Web site at www.pbs.org/fredfriendly/ourgenes,where you can:

■ Take the “What Do You Know?” quiz to test your basicknowledge of genetics.

■ Meet the Participants for background on the hosts, mod-erator, and panelists.

■ Answer the Poll to compare your views on genetics withothers’.

Pre- and Post-Viewing QuestionsThis viewer’s guide divides the program into threesegments, each with a specific theme. The questionsare organized accordingly. To find a particular seg-ment on your videotape, begin by setting the count-er to 00:00 when you first see the Fred Friendly logo.Then, fast forward to the section in which you areinterested.

Theme of Segment 1: Genetic information about a population carries both

benefits and risks.

Questions to consider before watching Segment 1 [00:00to 19:44 on the videotape counter]: ■ If you were a scientist interested in conducting a

study of a possible genetic basis for addiction toheroin, how would you select the participants?How do you envision the results of your studybeing put to use?

■ As you watch, think about how you would respondif you were asked to participate in a study of genet-ic susceptibility to alcohol addiction in your com-munity. What factors might you consider in choos-ing whether or not to participate?

After watching Segment 1:■ Were Stanley and Karen under any moral obligation

to participate in a scientific study if the results couldyield health benefits for other members of theircommunity? Are those same people under a moralobligation not to participate because discriminationagainst their social group might result?

■ Should the interests of the Tracy Islanders havebeen better protected? If so, how, and by whom?

■ What do you think of Barry Mehler’s point that theincidence of alcoholism should not be addressedindependent of environmental factors such ashomelessness, reduced social services, and otherstresses on recent immigrant populations? Howcan scientists remain mindful of the social contextin which their studies take place?

Theme of Segment 2: Behavior is complex, and is governed by both genet-

ic and environmental factors.

Questions to consider before watching Segment 2 [19:44to 28:25 on the videotape counter]:■ If you were a member of a population being used

in a genetic study, how do you think greater knowl-edge of your genome would affect your perceptionof yourself? Would this depend on the nature of thetrait being studied? How might you use the infor-mation to your group’s advantage?

After watching Segment 2:■ Francis Collins, playing the role of a university sci-

entist, states that study results show that TracyIslanders have an increased risk of addiction toalcohol. Even though the research has “no imme-diate clinical application,” journalists trumpet thata “cure for alcoholism” is around the corner. Howmight scientists and journalists facilitate moreaccurate coverage of ongoing genetic research?What is the potential impact of inaccurate or sen-sational reporting of the research?

■ As a journalist, you get word of a study indicatingthat a particular group has a higher frequency (ascompared to the general population) of a geneassociated with addiction to heroin. What ques-tions would you have for the scientists you inter-view? What story would you tell? What headlinewould it run under? If the research were only pre-liminary, would you still run the story?

■ Evan Balaban notes that “as scientists, we haveconflicting interests. We have responsibilities tocommunities [but we] always feel pressure to pro-duce some kind of a result.” Can a study ever beneutral? How can the interests of the various stake-holders be reflected in the way the results are pre-sented in the media?

M O D E R A T O R

Charles Ogletree, Professor, HarvardLaw School

P A N E L I S T S

Evan Balaban, Head of NeurosciencesProgram, City University of New York

Stephen G. Breyer, Associate Justice,United States Supreme Court

Johnnie L. Cochran, Jr., DefenseAttorney

Francis S. Collins, Director, NationalHuman Genome Research Institute

Stanley Crouch, Columnist, New YorkDaily News

David Goldman, Chief, Laboratory ofNeurogenetics, National Institute on AlcoholAbuse and Alcoholism

Colin Gracey, Chaplain, NortheasternUniversity, and Board member, Council forResponsible Genetics

Dean H. Hamer, Chief, Gene Structureand Regulation, National Cancer Institute

Gwen Ifill, Moderator and Managing Editor,Washington Week in Review, PBS

Patricia King, Professor of Law, Medicine,Ethics and Public Policy, GeorgetownUniversity Law School

Alan H. McGowan, President, GeneMedia Forum

Barry Mehler, Professor of History, FerrisState University, and Executive Director,Institute for the Study of Academic Racism

Karen H. Rothenberg, Dean, University of Maryland School of Law, andpast President, American Society of Law,Medicine and Ethics

Nadine Strossen, President, AmericanCivil Liberties Union and Professor of Law,New York Law School

Victoria Toensing, Partner, diGenova andToensing law firm

P A R T I C I P A N T S

14

Genes on Trial

Genetics, Behavior, and the Law

15

I have to tell you folks, we have a history in this country of looking atpeople’s genes to weed out the supposedly social undesirables.

– Nadine Strossen“ ”

16

finish the triathlon in a dead heat. The lawyer for one main-tains that since his client—unlike her rival—does not possessthe genetic marker linked to endurance, she deserves themedal for having overcome greater odds to achieve her goal.Is this relevant? Is it different from using drugs to enhanceperformance? How do you think you would rule?

17

Theme of Segment 3: Growing knowledge of the relation between

genes and behavior could alter our notion of

free will and responsibility under the law.

Questions to consider before watching Segment 3[28:25 to the end on the videotape counter]:■ Schizophrenia has a genetic component. The dis-

ease can be managed with medications, but theyhave terrible side effects. Suppose you’re the judgepresiding over the case of a young woman with ahistory of paranoid schizophrenia who voluntarilywent off her medication and subsequently killed aneighbor who came to check on her. Genetic testsshow that the defendant has the genetic marker forschizophrenia. Do you think this should be admit-ted as evidence in the trial? Why or why not?

After watching Segment 3: ■ Do you think defense attorney Johnnie Cochran’s

argument that a genetic predisposition has takenaway Joseph’s free will is a valid one? ShouldJoseph therefore go unpunished? How about pros-ecutor Victoria Toensing’s counter-argument thatsuch a susceptibility makes Joseph a danger to hiscommunity? Should he therefore be incarcerated?What are the implications for other people withthis gene? Does society stand to gain or lose ifcourts of law admit evidence about links betweengenes and individual behavior?

■ Hypothetical journalist Brad Blueblood maintainsthat since alcoholism is genetically predetermined,there’s no point in pouring money into treatmentprograms. Yet treating many diseases requires notjust medical treatment but social measures likeprevention and equal access to health care. How

can we balance the use of limited resourcesbetween social and environmental programs andbiomedical treatments?

Expanding the Discussion

Questions to help you grapple with the program’s issuesin a broader context:■ Educational psychologist Arthur Jensen was con-

vinced that intelligence is fundamentally an inher-ited trait. In 1969, he published an article claimingthat African Americans’ lower scores on intelli-gence tests were due to inherent intellectual differ-ences between “blacks and whites,” rather than tothe effects of poverty, discrimination, and otherremediable factors. This was used to fuel argu-ments against Head Start and affirmative actionprograms. If you were a scientist studying geneticinfluences on certain kinds of mental abilities, howcould you reduce the risks of the information beingused to serve personal or political agendas?

■ The science of eugenics—the belief that traits like“feeblemindedness,” criminality, or dwarfismcould be eliminated from the gene pool throughselective breeding—gained widespread popularityin the U.S. in the early twentieth century. Aboutthirty states enacted laws that resulted in approxi-mately 30,000 allegedly mentally ill or mentallyretarded persons being involuntarily sterilized. Canyou think of other examples when genetic infor-mation has been used to weed out or discriminateagainst genetic “undesirables?” Do you think thisis more likely to happen as more detailed knowl-edge of the genome emerges?

■ Suppose you sit on an Olympic court. Two athletes

Genes on Trial cont.

Genetics, Behavior, and the Law

R E S O U R C E S

For the complete list of Web, print,and video resources, please visitwww.pbs.org/fredfriendly/ourgenes

Behavioral GeneticsAn introduction to behavioral genetics,including methods used to study the geneticsof behaviors and the implications of this fieldfor society.http://www.ornl.gov/hgmis/elsi/behavior.html

Communities of Color andGenetics Policy ProjectThe Communities of Color and GeneticsPolicy Project has developed a process for engaging communities of color of diversesocio-economic levels in dialogues relatingto genome research. From these dialogues,the project developed recommendations for laws, professional standards, and institutional policies regarding the use andapplication of genome research.http://www.sph.umich.edu/genpolicy/

Impact of Behavioral Geneticson Law and the CourtsAn article by Mark Rothstein on the impactgenetics will have on the judicial system.http://www.ornl.gov/hgmis/publicat/judica-ture/article5.html

National Institute of AlcoholAbuse and AlcoholismNIAAA supports and conducts biomedicaland behavioral research on the causes, consequences, treatment, and prevention ofalcoholism and alcohol-related problems. Thesite includes related publications, research,and links to additional organizations. http://www.niaaa.nih.gov/

Galileo may have been subject to misunderstandings, but the solution wasn’t

to stop Galileo. So our idea here is that basically we do go ahead with scientific research

when it’s going to help people.

– Justice Stephen Breyer

“”

I believe that there’s something inherent in whatit is that you’re actually studying that feeds into

the question of the quality of the science. Of how good an answer you can hope to get.

And there is a line somewhere that I think we have just crossed.

– Evan Balaban

“”

The scenarios in Our Genes/Our Choices present only a

few of the many ways in which new genetic technolo-

gies affect people’s lives. The two activities below sug-

gest other ways to think about how genetic informa-

tion affects both individuals and society at large.

How to Behave in a Brave New WorldEvery day genetic technologies present people withwrenching dilemmas, like the ones you’ve seen in theOur Genes/Our Choices programs. Often no easyanswer presents itself, and any personal choice is likelyto affect others. One of the keys to ethical thinking inthese conditions is to consider all the parties who havesomething at stake, and to keep in mind that there areoften many ways to arrive at a decision, as well as mul-tiple resolutions. Dr. Mary Ann Cutter’s essay, “ShouldWe?,” shows how you might structure your thinking inorder to assess the different positions of all the stake-holders involved.

The National Cancer Institute estimates that about 1in 8 women in the United States will develop breastcancer during her lifetime. Tests can screen for dysfunc-tional forms of the BRCA-1 and BRCA-2 genes, whichare associated with an increased chance of developingcertain forms of breast cancer. But the implications ofthe test are far from clear-cut. Multiple genes play a rolein cancer; having the dysfunctional form of the genedoesn’t mean you will absolutely get the disease, inpart because other genes play a role and in partbecause personal habits and the environment areimportant as well. Some individuals who have cancer-related forms of BRCA-1 and/or 2 do not go on to devel-op breast cancer, and individuals who have healthyforms of these two genes may still be at risk for breastcancer.

Suppose that 37-year-old Brenda works for a com-pany that offers free genetic screening for breast can-cer. Her husband wants her to be tested. Her mother,concerned about the possible repercussions for her andother family members, recommends against it.Brenda’s doctor recommends more frequent mammo-grams in the event of a positive result, while her gyne-cologist recommends a radical mastectomy.■ Should she have the test?■ Who should have access to the results—and who

else might obtain them?■ How could Brenda go about making her decision?■ How should she evaluate her family history, and take

into account the opinion of close relatives and herdoctor?

Make a list of all the possible stakeholders. See ifyou can convincingly argue the point of view ofeach. Can you figure out an outcome satisfactory toall? Can you arrive at multiple “fair“ outcomes?

Genetics in the NewsThe field of genetics is evolving with extraordinaryspeed, generating new information, therapies, and the-ories all the time. Fifteen years ago, expectant motherscould undergo amniocentesis to be tested for a handfulof genetic conditions such as Down’s syndrome and TaySachs disease. Genetic counselors can now requestscreening for hundreds of conditions, and the list isgrowing fast. Likewise, the list of conditions in whichgenetics is known to play a significant role has expand-ed to include schizophrenia, resistance to AIDS, andsome forms of cancer.

But it’s often hard to understand the implications ofgenetic information. Media coverage can be misleading,as in the 1984 discovery of the BRCA-1 gene, which isstrongly associated with a hereditary form of breast can-cer. The news led many to fear that genetics was destiny,despite the fact that this particular gene accounts for lessthan five percent of breast cancer cases.

The public perception of new medical treatments islikewise susceptible to distortion. Nearly 40 years afterscientists discovered the gene that causes chronicmyelogenous leukemia, a drug called Gleevec came onthe market. Touted as a wonder drug, it did indeedcause a remission of this dreadful disease in the vastmajority of patients who took it. But the news also gaverise to wildly unrealistic expectations that the cure forother forms of cancer was around the corner.

Likewise, the use of stem cells and therapeuticcloning raises hopes of treating diseases fromParkinson's to heart disease, despite the fact that thesetechnologies are unlikely to offer anything to the med-ical consumer for the foreseeable future. Nevertheless,media attention swirls around them, fueled by ethicalcontroversies and the science-fiction-like scenarios thatthey may some day make possible.

Choose one of the five conditions listed below and track

media coverage over the past decade. List the mile-

stones in understanding the genetic and environmental

contribution to these conditions, or any others that are

of special interest. What are the implications for health

policy, research funding, and medical treatments?

■ asthma

■ obesity

■ autism

■ heart disease

■ alcoholism

R E A L S T O R I E S

Every day genetic counseling presents people with

many difficult choices: whether to be tested, who

should have access to the results, and who has a

voice in these decisions. Here are the stories of a few

families who have grappled with the complex implica-

tions of genetic information.

Weighing a Parent’s Right Against a Child’s A 35-year-old woman, the mother of a 10-year-old sonand an 8-year-old daughter, came to the genetics clinicfor counseling. Her father had been diagnosed in hislate forties with Huntington’s disease, a devastatingprogressive neurological condition which shortens lifespan and has no cure. Now that she was nearing thetypical age of onset for the disease, she wanted to findout whether she was facing the same fate.

The genetic counselor explained the relevant test-ing guidelines, and they talked about how the resultscould affect the woman’s life decisions. A month later,the woman completed the necessary evaluations, andproceeded with testing. Unfortunately, her test resultscame back positive. Since that meant that each of herchildren had a 50 percent chance of inheriting the dis-ease, she requested that they too be tested. As a par-ent, she felt she had a right to this information andwanted relief from the emotional burden of not know-ing what lay ahead for her kids. In the event that eitherone or both of them had the Huntington’s disease genemutation, she wanted to be able to allocate her limitedfinancial resources accordingly.

Since Huntington’s disease mainly affects adultsand childhood cases are rare, the testing guidelinesspecify that individuals should make their own deci-sions about testing and be at least eighteen years ofage. Therefore, the genetic counselor declined themother’s request, also emphasizing that genetic test-ing of children is only performed when there is a med-ical benefit to the child.

How Does Genetic Information Affecta Family?A three-year-old boy was referred to the genetics clinicby his pediatrician. The boy was delayed in his devel-opment and hyperactive, and his speech ability wasextremely limited. His parents had no idea why. The

geneticists who examined the child established that hehad the physical features of Fragile X syndrome andrecommended genetic testing. Results confirmed thathe had Fragile X syndrome, which is the most commoninherited cause of mental retardation. Fragile X syn-drome results from a gene mutation on the X chromo-some and more often affects males, as they just have asingle X chromosome.

Since males receive their X chromosomes fromtheir mothers, the boy’s mother was informed thatshe was a carrier. This meant that not only was she athigh risk of having another child with Fragile X syn-drome, but that other relatives were at increased riskof being carriers or being affected as well. The boy’sparents were relieved to have an explanation for theirson’s behavior at last, and armed with this newknowledge they were better able to put appropriatetherapies in place.

Genetic information often affects an entire extend-ed family. The woman had three sisters, all of whomwere at risk of being carriers and one of whom waspregnant. Feeling strongly that her siblings should be ina position to make informed decisions, she told themher son’s diagnosis. The question, “Why didn’t I know?”reverberated up the family tree. Some family membersappreciated this information while others were angry.The pregnant sister initially wanted nothing to do withthe information, but later decided to be tested. It turnedout that her fetus was positive for Fragile X syndrome.The sister continued the pregnancy, but was able toprepare psychologically for the birth of a boy with spe-cial needs. While genetic testing had made it possible todiagnose the 3-year-old boy, the results had significantimplications for other family members as well.

By Caroline Lieber, M.S., CGC, Director, Human Genetics Program, Sarah Lawrence Collegeand Wendy R. Uhlmann, M.S., CGC, Coordinator, Medical Genetics Clinic, University of Michigan

18 19

E X T E N S I O N P R O J E C T S

For additional real stories and extension projects, please visit www.pbs.org/fredfriendly/ourgenes

OurGenes/OurChoicesFunding for the Our Genes/Our Choices viewer’s guide was provided by the NationalScience Foundation under Grant No. ESI-0087602. The contents of this publication aresolely the responsibility of the authors and do not necessarily represent the officialviews of the funder.

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 JohnsonFoundation, 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 ofEnergy Office of Science.

Our Genes/Our Choices is a production ofFred Friendly Seminars at ColumbiaUniversity Graduate School of Journalism inassociation with Thirteen/WNET New York.

Executive Producer: Richard KilbergProducers: Liz Norton

Mike DeWittWriters: Jay Ward Brown

Joan I. GrecoBroadcast Director: Mark GanguzzaExecutive Director: Barbara MargolisEditorial Director: Ruth FriendlyOutreach Director: Michelle PrinceThirteen/WNET

Executive-in-Charge: Stephen SegallerScience and

Educational Advisor: Dennis LiuPhotographs by: Don Purdue

The educational materials, which include thisprint guide and the accompanying Web site,were produced by the American Museum ofNatural History. Ellen V. Futter, President.

Executive Producer: Caroline NobelProduction Coordinator: Michael BroomWriter: Ashton ApplewhiteScience Content: Rob DeSalle, Ph.D.,

and Michael Yudell, MPH

Print Design: Amanda Kavanagh, Ark Design

Art Direction and Web Design: Stephanie Fotiadis

Technical Director: Steve GanoTechnical Developer: Drew Koning

Program Ordering Information

Our Genes/Our Choices is available on videocassette from:

Films for the Humanities and SciencesP.O. Box 2053Princeton, NJ 08543-2053Phone Toll-Free: Diane Bilello at 800/257-5126,ext. 8039 or Theresa Santiago at ext. 6113 (Forfurther information on DVD format, pleasecontact Diane or Theresa)Web site: www.films.com

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Off-air taping rights for Our Genes/Our

Choices are available to educators for oneyear following each broadcast release.

For more information about Fred Friendly Seminars, visit www.fredfriendly.org