bloodlines - pbs · technologies. but if we say that biology is the exclusive road to human...

Explore this and many other questions in the film, its web site (www.pbs.org/bloodlines) and this discussion guide.

Are we creating a world that we won’t want to inhabit?

B L O O D L I N E ST E C H N O L O G Y H I T S H O M E

Premieres nationally on PBS June 10th, 2003 at 9pm (check local listings)Underwritten by The Human Genome Project of the U.S. Department of Energy

Science and technology, particularly the new genetic and reproductive technologies, are breathtaking in their novelty and promise. They allow us to make and manipulatehuman life in startling new ways, and most of us are committed to the values theyembody, values of knowledge, progress and scientific innovation. Yet even as we aredrawn to these new technologies, we are made uneasy by them as they also challengeour ethical, social and legal frameworks. I believe that our strong visceral reactionscannot simply be dismissed as ignorance about what biotechnology can do; in manycases we know what it can do and are still concerned. Our gut reactions reflect a veryreal moral anxiety about the stability of the world that we know, and the future of thethings we care most about. These gut reactions matter—and need to be considered inthe classroom as well as in the courts and legislatures—because they point to the waysin which basic principles are challenged by scientific advances.

We seldom have the opportunity—or the tools—to explore systematically the rela-tionship between our gut-level feelings and our fundamental beliefs. The intersectionof law and biotechnology gives us a unique and compelling chance to do just that—to discover how deeply connected our visceral reactions actually are to democraticnotions of autonomy, dignity, equality, privacy and progress. The stories told in theB L O O D L I N E S documentary, web site and discussion guide make us reexamine what it means to be human, to be a parent, to inhabit our bodies and to have rights.

We all care about these fundamental ideas, and that is what gives me hope about ourability to make sense of these new technologies. We may disagree about what shouldbe regulated and what should be allowed, but many of us care deeply about what kindof human legacy we are creating. I believe it is incumbent upon us, as participants ina pluralistic democracy, to think hard—and talk a lot—about how we can promote human happiness, both by protecting individuals and by taking advantage of promis-ing technology. I hope that B L O O D L I N E S will engage people in this exciting andchallenging dialogue.

I would like to thank the Office of Science at the Department of Energy for its generoussupport of B L O O D L I N E S. The PBS special and this guide would not have beenpossible without its support.

Noel SchwerinWriter/Producer/Director

“Biology is just one way of understanding ourselves. It isn't the only way, but it's a very powerful way, and it has spawned a lot of powerfultechnologies. But if we say that biology is the exclusive road to human knowledge, we'll just be missing all the other dimensions.”

Stuart Newman, Biologist, New York Medical College

The B L O O D L I N E S : Technology Hits Home project, including thePBS special, the web site and this discussion guide, was written, producedand directed by Noel Schwerin. B L O O D L I N E S was underwritten bythe Human Genome Project of the U.S. Department of Energy’s Office ofBiological Research, Office of Science.

Visit www.pbs.org/bloodlines.

Copyright ©2003 Backbone Media. All rights reserved.

Please let us know how you are using this guide, the film orthe web site by emailing [email protected].

Other useful educational tools can be found at, for instance,www.accessexcellence.org/21st/TL/; www.med.upenn.edu/bioethic/wol/assignments.shtml; andhttp://www.nytimes.com/learning/index.html.

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me

Fact or Fiction? Guessing Game 02

Case 1: Who is a parent? 03Case 2: What is a family? 04 Case 3: What kind of children should there be? 05

Case 4: What is human? 06Case 5: Who owns your body? 07

Case 6: Who has rights? 08Case 7: Who has responsibility? 09

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Inside this guide This guide provides specific case-driven exercises appropriate for the classroom, as well as more general materialfor a wider audience. It follows the chapters of the film (Who is a Parent? What is Human? Who has Rights?)and is designed to work in tandem with the web site—which provides history, context and commen-tary on the ethical, legal and social implications of new biotechnologies—and the documentary. In particular,please visit the following sections of the web site for information directly related to the film and this guide: Making Precedent (for role play and context), the Commerce, Ethics and Law Themes (for analysis and overview), the Timeline and Mapping the Future (for history and context) and Resources (for related links).

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“Reproductive technologies create new opportunities to form families with biological inputs that are different than in the past. We are undertaking agiant social experiment with reproductive technologies, and we’re not quitesure what the ultimate outcome will be.” Lori Andrews, Law and Ethics Scholar

“There is no question more important than what is human. Our whole system is built around the concept that if you are human, you have certaininalienable rights that cannot be taken from you. If we start toying withthat concept, then who has this full package of rights, and are we going tostart discriminating against people based on how human we considerthem to be? On the other hand, if we deal with these types of research toorestrictively, we’re going to prevent very valuable therapies and pay a costas a society.” Patrick Coyne, Attorney and Patent Expert

“There is a sense among people that genetics raises different kinds of issues.It deals with relationships among family members, with intergenerationalhealth risks and with information that is extremely personal and private.So, to the extent that genetics raises those issues and is widely reported inthe press, but often misunderstood by the public, it causes a great deal ofunease.” Mark Rothstein, Law and Ethics Scholar

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F A C T O R F I C T I O N ? Also see Fact or Fiction at www.pbs/org/bloodlines.

Advances in biomedicine—particularly in genetic and reproductive technology—often seem like science fiction. Exploreyour assumptions and test your knowledge by playing this simple game. Only one statement of each pair is correct. Thefalse statement, however, is surprisingly close to the truth. Can you guess? (please see answers on back cover)

1

2

3

4

BA BA

BABA

In the 1980s, British scientists created cross-species chimeras, so-called “geeps,” by combiningthe embryos of sheep and goats and letting themgrow to become full-size animals. Now, in anattempt to track and find cures for single genedisorders, American scientists have engineeredhuman “she-male” combinations by injectinghuman male cells into human female embryosand allowing them to develop for six days.

Fertility doctors in the U.S. are able to create anartificial womb made from a woman’s own endo-metrial cells. Designed to allow women withdamaged or missing wombs to conceive children,the artificial womb is made of a matrix of thewoman’s own cells grown on biodegradeablematerial in the shape of a uterus. Embryos are“implanted” or attached to the artificial womband transferred back into the woman, and havesurvived for 30 days.

A British company that uses DNA for paternitytesting now offers a range of luxury items basedon a person’s unique DNA signature. Shopperscan order jewelry, rugs and engraved crystaldesigned in patterns based on their actual DNAsequence. The DNA patterns are reportedly preciseenough to positively identify an individual.

A small Western nation has contracted with a pri-vate biotechnology company to give the companyaccess to its citizens’ medical records. Thenation’s legislature made the deal on behalf of itsconstituents without requiring individualizedinformed consent from any.

A well-known artist in the U.S. has created Alba, agenetically engineered fluorescent bunny, as a workof art. The artist worked with scientists in Europeto insert a jellyfish gene (that creates fluorescence)into the embryo of a rabbit, and considers Alba tobe part of a critical discussion about transgenic art.The rabbit glows green.

Chinese researchers have created part-human,part-rabbit embryos by inserting the nucleus froma young boy’s cell into the hollowed-out egg of arabbit. Intended to make embryos for stem cellresearch, the hybrids developed for several daysin vitro. The researchers used rabbit cells becauseof the shortage of available human eggs.

Scientists in Israel have created a DNA “mini doc-tor” able to detect an abnormal chemical changein a body and correct it by first making and thenreleasing a therapeutic chemical cocktail. The so-called “biological computer,” which contains billionsof living cells, can perform a billion operationsper second and fits inside a drop of water.

U.S. doctors have successfully used stem cells tosave a young boy who suffered a heart attackafter being shot in the heart with a nail gun. Thecells were derived from the boy’s own blood and are part of a worldwide experimental trial to repair cardiac function with stem cells.

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W H O I S A PA R E N T ?

Relates to “Who is a parent?” in B L O O D L I N E S (in 02:08/out 25:44)

B L O O D L I N E S tells the story of an infertile couple desperate to have a child. After many failed attempts

at in vitro fertilization (in vitro is Latin for in dish, as opposed to in vivo, or in body) with their own genetic

material, John and Luanne Buzzanca finally conceived a child using an egg and sperm from anonymous

donors, and the help of a gestational surrogate who carried the baby. But just before the child was due,

John filed for divorce, claiming that he was not the father of the child and refusing to pay child support.

Luanne sued, and her case was the first time—other than adoption—that the courts were asked to decide

if a couple with no biological connection to a child would be considered the legal parents. In a decision

that stunned observers, the trial court ruled that the child had no legal parents. An appellate court later

reversed the trial court, saying that the “intended” parents were the legal parents. John is now the legal

father, and Luanne is the legal and custodial mother. The Buzzanca decision defines the law in California and

its emphasis on “intention” has been influential worldwide.

1.Who in this case should be considered the child’s parent(s)? Who is most responsible for the child?When does that responsibility begin?

2. Do you agree with either the trial court or appellate court’s decision? How would you rule?

3. How would you describe the relationships between the parties involved, for instance, between theinfertile mother and the surrogate? Between thesurrogate and the egg donor?

4. What do you think should be done to avoid situations like this one, in which a child wasalmost orphaned?

5. We don’t regulate one-night stands or a woman’sability to get pregnant to “catch a man.” Shouldwe treat families created with reproductive tech-nology differently?

6. Should we make a distinction between genetic,gestational and legal parents? What is the difference?

7. What responsibilities should each type of parenthave? What can adoption tell us about these differences?

8. Should reproductive technologies be regulated?Should legislators and/or courts answer the questionsof who is a parent, or what kinds of families orchildren there should be? If not, who should?

9. What criteria should be used to decide who is aparent of a child? Some possibilities might includethe intentions of the parties, the welfare of the childor the importance of preserving a family unit.

10. What is a reproductive right? See the Can youjudge a good parent? role play under MakingPrecedent at www.pbs.org/bloodlines.

11. What reproductive rights do infertile couples (gays/lesbians, single parents) have? What rights shouldthey have? What role should the rest of us have indefining those rights?

12. If you support one’s right to reproduce and agreethat the intentions of people trying to make a babyshould prevail (as in the Buzzanca case), is there alogical (or ethical or legal) limit to reproductivechoice? Should we have the right to clone ourselves?

13. What are the possible ways to create a baby?(There are at least 30. See the Can you judge agood parent? role play under Making Precedent atwww.pbs.org/bloodlines.)

14. Should the way in which a child comes into theworld make a difference about how it is treated?

15. How has kinship been defined by biology? Whyis biological kinship so powerful? What does thehistory of reproductive technology tell us aboutour changing idea of kinship?

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W H AT I S A FA M I LY ?

Relates to “Who is a parent?” in B L O O D L I N E S (in 02:08/out 25:44)

You are a 20-year-old female college student. In the college paper, you read an advertisement recruiting

young women to become egg donors for infertile couples. You answer the ad and meet the couple several

times. After all three of you go through medical and psychological screening, the couple asks you to par-

ticipate as the egg donor in the creation of their child. Should you agree?

Answer this question now, and again at the end of this exercise. Compare answers and calculate how manyof you changed your initial answer. See the Can you judge a good parent? role play under MakingPrecedent at www.pbs.org/bloodlines.

1. What if the ad offered “substantial compensation for time and effort”?

2. What if you had seen firsthand a close friend orfamily member devastated by infertility?

3. What if the couple wanted a donor with a high IQ and proven athletic and musical abilities?

4. What if the infertile couple was your sister/brotherand her/his spouse?

5. What if the infertile couple was gay or lesbian? Someone making a single parent family?

6. What if it was your mother, who had remarried, and wanted to have a child with her new spouse,but insisted the child be genetically related to bothof them?

7. In any of these situations, would you tell your family, friends or potential spouse? What wouldyou say to a friend who insisted you had “sold”part of your body?

8. What if, 10 years from now, you found out that you, too, were infertile?

9. What if you lived in the same area as the couple and might run into the child someday?

10.Would you tell your children, and if so, whatmight you say? What relationship, if any, can youimagine between your own children and the childconceived with your egg?

11.What if the child found you and asked for some kind of family recognition? If your ownchildren felt some recognition?

12.What if the couple wanted to have an open arrangement in which they or the child couldcontact you? Why might they want to?

13.What if the couple refused to tell the child, and acted as if the child was the product of their own genes?

14.What if the couple died? What if the child becamevery sick or died?

15.What if you were a man and had donated your sperm?

16.What if you discovered that you were conceived in such a “collaborative conception”?

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How do we define parenthood? Traditionally wehave looked to biology to define parenthood, but we have also recognized exceptions to this rule.For example, in the “marital presumption,” the lawdoes not see a necessary relationship between the biological father and the legal father of a child, and tries to protect the family unit by assuming that a husband is the legal father of his wife’s child,regardless of biology. Other social practices wherebiology is not necessarily the prevailing concerninclude adoption, custody and inheritance law.

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W H AT K I N D O F C H I L D R E N S H O U L D T H E R E B E ?

Relates to Who is a parent? in B L O O D L I N E S (in 02:08/out 25:44)

You and your spouse have been trying to have a baby for years. After three miscarriages, your doctor re-

commends in vitro fertilization, in which your eggs are fertilized with your husband’s sperm in a petri dish

and then some of the resulting embryos—genetically related to both of you—are transferred into your

womb. Now a procedure called pre-implantation genetic diagnosis (PGD) can tell you the sex of your

embryo before it is transferred to your womb and you become pregnant. Should you be allowed to select

embryos on the basis of their sex?

Answer this question now, and again at the endof this exercise. Compare answers and calculatehow many of you changed your initial answer. Seethe Can you pick your children? role play underMaking Precedent at www.pbs.org/bloodlines.

1. What if your family had a history of an untestable genetic disease that causes horrible disability, andthat only manifests itself in boys?

2. Every year about 3.7% of all U.S.-born babies are born with birth defects. Roughly 15% of thesedefects are thought to be genetic. What if youwere obligated—by medical or social pressure, orby your insurance—to use prenatal testing toscreen for children with genetic birth defects?

3. What if you wanted to use the technology but itwas too expensive or otherwise not available?

4. What if you had a sibling, close friend or child witha genetic disease and you chose to screen out embryoswith that disease? How would you tell them?

5. What if the ability to screen out abnormal embryosled to a decrease in social and financial supportfor people with disabilities?

6. What if your freedom to use prenatal technology also made it possible for other people to screenout embryos for reasons you consider wrong, trivial or even abhorrent?

7. Clinics can now test prenatally for nearly 1000 diseases, and the Human Genome Project maymake it increasingly possible to select children on

the basis of genes. Where would you draw the lineon what traits to screen for? For fatal diseases only?For late-onset disorders like Alzheimer’s? For dis-eases that are possible but unlikely? And if genesfor them were found, for obesity or poor eyesight?

8. What if you could use the technology to screen for an organ donor match for a child you already had?

9. What if you lived in China or India, where great value is put on the birth of a son, and sex selectionfor non-medical reasons, often in the form ofinfanticide, has been practiced for centuries?

10. What if you already had three boys and simply wanted a girl? So-called “family balancing” is currently available from many reproductive technology clinics.

AC

TIV

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:L

ist

any

spec

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row

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up. D

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they

wou

ld h

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trie

d to

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ter

your

pro

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by s

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dth

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How

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you

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tak

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wou

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llow

you

to

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wit

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tha

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ving

chi

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ther

hum

an a

ctiv

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s. W

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ight

you

wan

t a

child

? W

hy d

id y

our

pare

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have

you

? L

ist

as m

any

reas

ons

as y

ou c

an—

good

and

bad

—fo

r w

hy p

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e ha

ve c

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cha

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f w

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Eugenics (from the Greek for “well born”) is a pro-gram that tries to steer human reproduction in aspecific direction. Eugenics thrived in the UnitedStates for many years. For instance, the U.S. severelyrestricted immigration from places other thannorthern Europe, for fear of “contaminating” the American gene pool, and between 1907 and 1937,32 states forcibly sterilized individuals thought to be “undesirable.” Not until 1979 were steriliza-tion laws fully reversed. In 1927, U.S. SupremeCourt Justice Oliver Wendell Holmes spoke forthe majority in a ruling that upheld the forced sterilization of a young woman thought to be re-tarded, writing, “Three generations of imbecilesis enough.” Eugenics reached its horrific climaxin the Holocaust where many millions were killedin the name of racial purification.

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6

W H AT I S H U M A N ?

Relates to What is human? in B L O O D L I N E S (in 25:45/out 39:59)

Stuart Newman, a developmental biologist, has applied for a patent to make a human/chimp combination, or “chimera,” by mixing human embryonic cells with those of a chimpanzee. As BLOODLINES reveals, Newman has no intention of actually making a part-human, part-chimp creature. Instead, he has applied for thepatent to force a public review of the U.S. Patent and Trademark Office’s (USPTO) policy on patenting livingorganisms. The application intentionally presses the question of what constitutes a human being when biol-ogy so easily can cross species boundaries. The USPTO has rejected the application on the grounds that the invention “embraces a human.” Newman has since appealed the decision, and plans to continue to do so, up to the Supreme Court if necessary.

Jim Finn, a participant in an experimental treatment for Parkinson’s disease (and also a character inB L O O D L I N E S ), has had 12 million patented pig cells injected into his brain. He declares in the film, “Having pig cells in my brain has made me more of a human being, rather than less. I’m more whole. I’m more com-plete. I can do more things that a human being should be able to do.” Finn makes a compelling case forcontinued research—and patent incentives—in the area of cross-species experimentation.

1. What is your first reaction to the idea of a part-human,part-animal chimera? Why do you think peoplehave such visceral reactions to new biotechnologies?

2. What social benefits/disadvantages might come from allowing the patent? From disallowing it?

3. Is this an effective way to force a public review ofthe USPTO’s policy on patenting living organisms?

4. How would you compare this research to research on embryos that are genetically 100% human?

5. Is it possible to honor the deeply held beliefs of those who object to all human embryo research whilestill taking full advantage of biotechnology? How?

6. Jim Finn says that he feels “more human now.” How is he more human? Do you have any question—and what might make you question—whetherJim Finn is human?

7. In the last decade, the USPTO has issued hundredsof patents for animals with human cells and genes.Is there a threshold number of human cells thatwould make an organism human? A threshold thatwould violate the 13th Amendment against slavery?

8. Does biotechnology make it easier or harder to define human? Why? What are the implications?

9. What special privileges and rights does our societyconfer to humans?

10. What is considered a person by the law and how is that concept important to the law?

11. Why are certain people considered “protected classes” in the eyes of the law? What responsibili-ties do we have to children, the mentally ill orpeople in a vegetative state? Under what conditionsdoes the law revoke a person’s rights, for example,the right to vote?

12.When might a human-chimp chimera be considereda person or have rights?

13. Would a cloned human be considered a personwith full rights? What about the result of ahuman cloning experiment that went awry?

14. What is a species? Has it changed with the ability to combine species? What is the biological importanceof the notion of species? The political importance?

AC

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how

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isci

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phi

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5W H O O W N S YO U R B O DY ?

Relates to What is human? in B L O O D L I N E S (in 25:45/out 39:59)

You are a 25-year old medical student with a promising future—that is, until one afternoon you are hit bya car and end up in the hospital with severe internal injuries. Unable to save your liver, doctors wait list you for an organ transplant, but explain that only one liver is available for every three people in need of a trans-plant. They also tell you about an experimental treatment that replaces your liver with a liver harvested froma genetically engineered pig (bred for transplant primarily because its organ size and function closely resemblethose of humans). The treatment requires you to be closely monitored for the rest of your life and autopsiedwhen you die. Risks include acute (and fatal) organ rejection, severe immunosuppression and contracting pigviruses. Because animal viruses can jump to humans and cause serious conditions such as AIDS and SevereAcute Respiratory Syndrome (SARS), you may also become a health risk to your loved ones, your doctors andthe public at large. You can never have unprotected sex with another person, and, in all probability, your tissuewill be sampled, studied, patented and licensed to biotechnology companies when you die.

See the Ethics and Commerce Themes and the Is your body your own? role play under Making Precedentat www.pbs.org/bloodlines.

1. Would you participate in the treatment? What factors weigh most heavily in your decision?

2. What is the balance between the treatment’s possible benefits and the unknown health risksand lifestyle restrictions it imposes?

3. As a taxpayer, how willing would you be to support the treatment for others?

4. Though the treatment is quite costly, you pay nothing. The biotechnology company doing the clinical trial plans to recoup its losses bypatenting cell lines derived from your immunecells. If you participate, should you have the right to share in any profit? Should human cells,genes or tissues be patentable? Are they?

5. What rights do you or should you have over your body?

6. Would having a property interest in your body— owning it, so to speak—give you greater controlover what happens to it? Would it open the doorto selling such an interest, as in the trade fororgans, or to other people “owning” your body,as in slavery? Is your body your property?

7. If so, should you be allowed to sell parts of it, for example, your sperm or eggs?

8. The sale of organs is illegal worldwide, but occurs frequently as part of a black market. Why?Should you be allowed to sell your own organs?

9. Estimates suggest that more than 60,000 people who would benefit from a transplant die each yearwaiting for one. Are the risks and costs of animalorgan transplants better or worse than a black marketin organs and the potential death of those in need?

AC

TIV

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S:

Ena

ct a

n in

stit

utio

nal r

evie

w b

oard

(IR

B)

revi

ew o

f an

exp

erim

enta

l clin

ical

tri

al a

t a

maj

or r

esea

rch

hosp

ital

. Cho

ose

from

a v

arie

ty o

f ro

les:

a r

esea

rche

r w

ho w

ants

to

stud

y pa

rt-h

uman

chim

eras

; a d

ying

pat

ient

des

pera

te t

o en

roll

in a

tri

al; a

hos

pita

l chi

ef e

ager

to

keep

his

inst

itut

ion

solv

ent

and

curr

ent

in t

he f

ield

; a b

iote

chno

logy

CE

O w

ho h

opes

his

par

tner

ship

wit

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; a

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mem

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out

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ents

to

loca

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alth

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imal

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uses

. D

ebat

e th

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of t

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linic

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, w

eigh

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one

indi

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and

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iffe

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and

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ach

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ct?

Whi

ch w

ould

/sho

uld

be p

aten

tabl

e?

Q U E S T I O N S F O R D I S C U S S I O N Patent law states that “anything under the sun made by man” may be patented if it is novel, non-obvious and presented in the right way. In theory,patents provide incentive for research and inno-vation (the inventor can reap economic rewardfrom his or her temporarily exclusive use of the invention) and also for the dissemination of know-ledge (inventors must publish their inventions). In Diamond v Chakrabarty (1980), the SupremeCourt opened the biotech-nology floodgates byruling for the first time that living organismscould be patented.

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W H O H A S R I G H T S ?

Relates to Who has rights? in B L O O D L I N E S (in 40:00/out 53:25)

B L O O D L I N E S tells the story of Dave Escher and Gary Avary, railway maintenance workers and loyal

employees of the Burlington Northern Santa Fe Railway (BNSF) for over 25 years. Each experienced serious

pain and numbness in his hands and was ultimately diagnosed with work-related carpal tunnel syndrome

(CTS). Surgery was recommended: Gary had the surgery and returned to work; Dave scheduled his operation.

Both men were then summoned by BNSF to a mandatory medical screening to see if their CTS was work-

related (and so, subject to a range of company-provided benefits). Gary’s wife, a registered nurse, became

suspicious, and ultimatley discovered that BNSF was secretly testing the men for a genetic predisposition to

CTS. Gary and Dave sued, joining a case brought by the Equal Employment Opportunity Commission (EEOC)

against BNSF. In 2002, the suit settled, and $2.2 million were distributed among the 36 employees named

in the suit. Whether BNSF acted illegally is still unresolved.

Please note: there is no genetic test for CTS; BNSF mistakenly used an uninformative test.

1. Why do you think BNSF conducted the genetic testing program? What other kinds of organiza-tions might have an interest in knowing workers’genetic predispositions to disease?

2. Were Gary’s and Dave’s rights violated? How? Which rights?

3. What is privacy and was it violated in this case?

4. What is discrimination and were Gary and Dave discriminated against? Can you be discriminatedagainst by being perceived to have a disability youdon’t actually have?

5. Were Gary and Dave harmed by the testing? What criteria should be used to assess harm? To remedy such harm?

6. How do genetic tests compare to other tests required of employees? Other medical tests?

7. Gary and Dave had CTS symptoms. Can you imagine an employer wanting genetic informationabout them (or you) in the absence of symptoms?

8. How should the law—and employers—view a predisposition to a disease? Is it an illness? Is it a disability? What is at stake in the answer tothis question?

9. Does your state regulate genetic testing or genetic information? In the workplace? Anywhere else?Visit Mapping the Future at www.pbs.org/bloodlines.

10. If not, do you think regulation is needed? At the state or federal level? What would you propose?

11. Can you imagine any legitimate use of genetic testing in the workplace? Under what conditions?Would you want to know, for instance, that youwere particularly vulnerable to certain workplaceexposures?

12. If so, how would you want the company to tell you? What kinds of protections or benefits, if any,might you expect to receive? Would these differfrom other medical protections or benefits?

13. Is genetics qualitatively different from other kindsof private information, either in its meaning topeople or in its power as a medical technology?

AC

TIV

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S:

Lis

t al

l of

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rig

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that

you

thi

nk t

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ants

Am

eric

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itiz

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the

Bill

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(Am

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ents

1–1

0) t

o th

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your

lis

t. T

hen

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pile

a l

ist

of r

ight

syo

u th

ough

t yo

u ha

d bu

t th

at a

re n

ot in

the

U.S

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n, a

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whe

ther

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ate

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at p

rote

ct y

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ay b

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to le

arn

that

the

Con

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ly p

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gov

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U.S

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t fi

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s or

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its

that

you

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ld b

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illin

g to

be

test

ed f

or, a

nd f

ive

for

whi

ch y

ou w

ould

nev

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onsi

der

test

ing.

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ch o

f th

ese

are

dise

ases

? W

hat

does

it m

ean

to b

e he

alth

y or

“no

rmal

”if

we

all h

ave

som

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mea

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Visit the Are you a genetic time bomb? role play under Making Precedent at www.pbs.org/bloodlines.

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7W H O H A S R E S P O N S I B I L I T Y ?

Relates to Who has rights? in B L O O D L I N E S (in 40:00/out 53:25)

You are a family doctor seeing a 55-year-old mother of three grown boys. Six months ago, when she com-

plained of being distracted, clumsy and “out of sorts,” you ran a number of inconclusive tests. Today she is

lurching and slurring her words. After probing her family history—her father died after exhibiting similar

symptoms—you diagnose your patient with Huntington’s disease (HD), a degenerative genetic brain disorder

for which there is no effective treatment or cure. Over time, HD undermines the ability to walk, talk, think

and reason. Unlike most genetic diseases, HD invariably sickens and kills those who carry the gene. Children

have a 50% chance of inheriting the gene from a parent who carries it. There is a genetic test for HD now

available. Do you have a duty to warn anyone of risks stemming from your patient’s disease, even if it

means compromising confidentiality? To what extent does this depend on the circumstances?

Answer this question now, and then again at the end of this exercise. Compare answers and calculate howmany of you changed your initial answer.

1. Who should you consider your patient when not just the mother, but also her sons are at risk?Does the fact that HD is a genetic disease make adifference here?

2. What if your patient does not want to “burden” her sons by telling them of her diagnosis? Do youhave a duty to warn your patient’s children? Whatabout her siblings, nieces and nephews?

3. Should relatives have a duty to tell each other about known genetic risks? What rights should relativeshave? The right to stop each other from testing?The right to force each other to test?

4. What if some of your patient’s relatives are start-ing families and would consider using prenatalgenetic testing to avoid HD?

5. What if a gene for one disease later turned out to cause other diseases, as is the case with a gene tiedto both heart disease and Alzheimer’s? Would youhave a duty to tell your patient? Her sons?

6. What if (as is actually the case in this real-life story),all three of your patient’s sons work as air trafficcontrollers in a major city?

7. What legal or moral duties, if any, do you have to disclose the sons’ risk to their employer?

8. Once they know their risk, do the sons have a duty to get tested? To disclose their risk? To stop working? What if they refuse to get tested for fear of being stigmatized and losing their jobsand insurance?

9. Are the sons’ fears legitimate? How would you protect both the sons and public safety?

10. The sons are perfectly healthy now. Do they represent any greater risk than, for instance, a person withsilent but deadly heart disease? What if the sonsbegin to show symptoms? What if the sons carrieda less predictably disabling genetic risk? One thatnever made them sick?

11. Should the sons be entitled to special protection (e.g., social security disability) or subject toincreased responsibilities (e.g., mandatory testingor monitoring)?

12. Does the ability to test for genetic predispositions to future disease change one’s personal or profes-sional rights or responsibilities? Does it createnew rights to know (by the employer or generalpublic, for instance) or not to know (by the sons)?

13. Can you imagine any situation—in medicine, in the workplace, etc.—where genetic testing shouldbe mandatory? If so, under what conditions?

AC

TIV

ITY

:B

reak

up

into

gro

ups

to d

iscu

ss w

hat

kind

s of

sit

uati

ons

mig

ht j

usti

fy b

reac

hing

an

indi

vidu

al’s

pri

vacy

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ical

con

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Loo

k to

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new

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xam

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: in

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dis

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ffec

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con

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an

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chi

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have

in c

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Con

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e in

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lic h

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ify

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edic

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for

exam

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of p

ublic

tran

spor

tati

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pera

tors

or

DN

A fi

nger

prin

ting

of c

rim

inal

s. R

evie

w th

e A

men

dmen

ts to

the

U.S

. Con

stit

utio

n (4

than

d 14

th) t

hat p

erta

in to

suc

h te

stin

g, a

nd r

esea

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rece

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urt

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sex

pand

ing

the

reac

h of

man

dato

ry “

susp

icio

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s se

arch

es”

in p

ublic

sch

ools

.


Visit the Do you have a duty to warn? and Are you a genetic time bomb? role plays under Making Precedentat www.pbs.org/bloodlines.

“A compelling and important work.”

Donald Kennedy, Editor in Chief, SCIENCE

“An immensely provocative and well-done film.”

Robert Sapolsky, Why Zebras Don’t Get Ulcers

“B L O O D L I N E S should serve as a model ofthe way the media can contribute to expand-ing public discussion of key moral questions. Iwish it could be seen by everyone.”

Paul Ehrlich, Human Natures

“In sensitive, reflective, and sophisticated ways, the film reveals just how much the ‘future’conundrums of genetics, law, responsibility,and human dignity are already with us.”

Troy Duster, Backdoor to Eugenics

B L O O D L I N E S : T E C H N O L O G Y H I T S H O M EA PBS documentary and “Program Pick,” produced by Noel Schwerin

Offering hope to infertile couples. Curing disease by mixing human and animalcells. Assessing risk with genetic testing. Over the past few decades, the publichas become increasingly comfortable with a growing menu of medical procedures,as concepts and treatments that were once science fiction become commonplace.

But as reproductive and genetic technologies move out of the laboratory andinto medical practice—as they are combined into complex applications andapplied in unforeseen ways—they are playing out dramatically in true humanstories. And they are winding up in the courtroom.

A baby with five “parents” and none of them recognized by law. A patentapplication for a creature that would be genetically part human and partchimpanzee. A corporation secretly doing genetic tests on its workers. Thesescenarios are not only real, they are challenging our most fundamental beliefsand establishing legal precedents that govern our future.

The B L O O D L I N E S project (which includes a one-hour PBS documentary,an interactive web site, outreach and this guide) reveals how new life tech-nologies are raising ethical, legal and social dilemmas as cutting-edge scienceintersects with the law. What does it mean to be a parent? To be human? To have rights? The B L O O D L I N E S project tells us what is at stake when pub-lic policy trails behind medical science, and human dramas set the precedentfor an uncertain future. Are we creating a world that we won’t want to inhabit?

ANSWERS TO FACT OR FICTION (P.2)1) A is fact. So is B, except that the DNA patterns arenot precise enough to identify individuals. 2) A is true. So is B, except that experiments did not last30 days; they were halted after six. 3) B is true. So is A, except that the rabbit does not glow green.4) B is true. So is A, except that the “mini doctor” is still in development.

D I S C U S S I O N G U I D E C R E D I T S :

Written and Produced by Noel Schwerin Backbone Media 58 Harper Street, San Francisco CA 94131415.282.5620

Designed by NOON

Copyedited by Eliza JewettCover photograph by Steve BurnsUnderwritten by The Human Genome Project of the U.S. Department of Energy

Visit www.pbs.org/bloodlines.Copyright ©2003 Backbone Media. All rights reserved.

To obtain a VHS copy of B L O O D L I N E S , please call 800.343.5540,or email [email protected]. Please let us know how you used thisguide at [email protected].

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