Bloodlines Technology Hits Home

BLOODLINES TECHNOLOGY HITS HOME

Are we creating a world that we won’t want to inhabit? Explore this and many other questions in the film, its web site (www.pbs.org/bloodlines) and this discussion guide.

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 W Science and technology, particularly the new genetic and reproductive technologies, are breathtaking in their novelty and promise. They allow us to make and manipulate human life in startling new ways, and most of us are committed to the values they embody, values of knowledge, progress and scientific innovation. Yet even as we are drawn to these new technologies, we are made uneasy by them as they also challenge elcome our ethical, social and legal frameworks. I believe that our strong visceral reactions cannot simply be dismissed as ignorance about what biotechnology can do; in many cases we know what it can do and are still concerned. Our gut reactions reflect a very real moral anxiety about the stability of the world that we know, and the future of the things we care most about. These gut reactions matter—and need to be considered in the classroom as well as in the courts and legislatures—because they point to the ways in which basic principles are challenged by scientific advances.

We seldom have the opportunity—or the tools—to explore systematically the relationship between our gut-level feelings and our fundamental beliefs. The intersection of 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 democratic notions of autonomy, dignity, equality, privacy and progress. The stories told in the BLOODLINES 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 our ability to make sense of these new technologies. We may disagree about what should be regulated and what should be allowed, but many of us care deeply about what kind of human legacy we are creating. I believe it is incumbent upon us, as participants in a 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 promising technology. I hope that BLOODLINESwill engage people in this exciting and challenging dialogue.

I would like to thank the Office of Science at the Department of Energy for its generous support of BLOODLINES. The PBS special and this guide would not have been possible without its support.

Noel Schwerin Writer/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 powerful technologies. 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 BLOODLINES:Technology Hits Home project, including the Please let us know how you are using this guide, the film or PBS special, the web site and this discussion guide, was written, produced the web site by emailing [email protected]. and directed by Noel Schwerin. BLOODLINES was underwritten by Other useful educational tools can be found at, for instance, the Human Genome Project of the U.S. Department of Energy’s Office of www.accessexcellence.org/21st/TL/; Biological Research, Office of Science. www.med.upenn.edu/bioethic/wol/assignments.shtml; and Visit www.pbs.org/bloodlines. http://www.nytimes.com/learning/index.html. Copyright ©2003 Backbone Media. All rights reserved. Inside this guide This guide provides specific case-driven exercises appropriate for the classroom, as well as more general material build on each other to create an increasingly for someone else’s predicament in another equally for someone else’s

for 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 BLOODLINES overview), the Timeline and Mapping the Future (for history and context) and Resources (for related links). w they justify those decisions ethically. w they justify those decisions ethically. icipants also learn that serious ethical debate cannot be reduced to simple he appropriate balance should be, for instance, between an individual’s right he appropriate balance should be, for instance, between an individual’s

Fact or Fiction? Guessing Game 02

Case 1: Who is a parent? 03 Case 2: What is a family? 04 Case 3: What kind of children should there be? 05 “Reproductive technologies create new opportunities to form families with biological inputs that are different than in the past. We are undertaking a giant social experiment with reproductive technologies, and we’re not quite sure what the ultimate outcome will be.” Lori Andrews, Law and Ethics Scholar

Case 4: What is human? 06 Case 5: Who owns your body? 07 still collide when it comes to biotechnology. Finally, the cases in Finally, still collide when it comes to biotechnology. “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 certain inalienable rights that cannot be taken from you. If we start toying with that concept, then who has this full package of rights, and are we going to start discriminating against people based on how human we consider them to be? On the other hand, if we deal with these types of research too restrictively, we’re going to prevent very valuable therapies and pay a cost as a society.” Patrick Coyne, Attorney and Patent Expert that we do agree about

Case 6: Who has rights? 08 the context of a situation can make all difference in what people decide to do, and ho Case 7: Who has responsibility? 09 “There is a sense among people that genetics raises different kinds of issues. It deals with relationships among family members, with intergenerational health risks and with information that is extremely personal and private. So, to the extent that genetics raises those issues and is widely reported in the press, but often misunderstood by the public, it causes a great deal of , viewers confront ethical dilemmas firsthand. Sympathy for a character in one story is not necessarily compatible with support unease.” Mark Rothstein, Law and Ethics Scholar BLOODLINES complex moral landscape, one in which In compelling case. Interests compete, and users of this guide have to think for themselves about what they feel, t interest—in the welfare of a child. Part to make private family-building decisions and other peoples’ interest—even the state’s either/or arguments, and that even the values www.pbs.org/bloodlines

1 F ACT OR FICTION? Also see Fact or Fiction at www.pbs/org/bloodlines.

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

A British company that uses DNA for paternity A small Western nation has contracted with a pri- testing now offers a range of luxury items based vate biotechnology company to give the company on a person’s unique DNA signature. Shoppers access to its citizens’ medical records. The can order jewelry, rugs and engraved crystal 1 nation’s legislature made the deal on behalf of its designed in patterns based on their actual DNA constituents without requiring individualized sequence. The DNA patterns are reportedly precise informed consent from any. A enough to positivelyB identify an individual.

Fertility doctors in the U.S. are able to create an In the 1980s, British scientists created cross- artificial womb made from a woman’s own endo- species chimeras, so-called “geeps,” by combining metrial cells. Designed to allow women with the embryos of sheep and goats and letting them damaged or missing wombs to conceive children, grow to become full-size animals. Now, in an the artificial womb is made of a matrix of the attempt to track and find cures for single gene woman’s own cells grown on biodegradeable 2 disorders, American scientists have engineered material in the shape of a uterus. Embryos are human “she-male” combinations by injecting “implanted” or attached to the artificial womb human male cells into human female embryos and transferred back into the woman, and have and allowing themA to develop for six days. B survived for 30 days.

A well-known artist in the U.S. has created Alba, a Chinese researchers have created part-human, genetically engineered fluorescent bunny, as a work part-rabbit embryos by inserting the nucleus from of art. The artist worked with scientists in Europe a young boy’s cell into the hollowed-out egg of a to insert a jellyfish gene (that creates fluorescence) rabbit. Intended to make embryos for stem cell 3 into the embryo of a rabbit, and considers Alba to research, the hybrids developed for several days be part of a critical discussion about transgenic art. in vitro. The researchers used rabbit cells because The rabbit glowsA green. of the shortage of Bavailable human eggs.

Scientists in Israel have created a DNA “mini doc- U.S. doctors have successfully used stem cells to tor” able to detect an abnormal chemical change save a young boy who suffered a heart attack in a body and correct it by first making and then after being shot in the heart with a nail gun. The releasing a therapeutic chemical cocktail. The so- cells were derived from the boy’s own blood 4 called “biological computer,” which contains billions and are part of a worldwide experimental trial of living cells, can perform a billion operations to repair cardiac function with stem cells. per second and fits inside a drop of water.

2 1WHO IS A PARENT? Relates to “Who is a parent?” in BLOODLINES (in 02:08/out 25:44)

BLOODLINES 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. e child’s cousins and what do they think? Does the surrogate have children of e child’s d/or children, parents, spouses or grandparents of any the above. Create a onships, the expectations each person has of the other (and how these differ, if at onships, the expectations each person has of other (and how these differ,

QUESTIONS FOR DISCUSSION

1. Who in this case should be considered the child’s 9. What criteria should be used to decide who is a parent(s)? Who is most responsible for the child? parent of a child? Some possibilities might include When does that responsibility begin? the intentions of the parties, the welfare of the child or the importance of preserving a family unit.

2. Do you agree with either the trial court or appellate Break up into groups to imagine possible “complex conceptions.” Choose from the following roles: a sperm court’s decision? How would you rule? 10. What is a reproductive right? See the Can you judge a good parent? role play under Making 3. How would you describe the relationships between Precedent at www.pbs.org/bloodlines. the parties involved, for instance, between the infertile mother and the surrogate? Between the 11. What reproductive rights do infertile couples (gays/

surrogate and the egg donor? lesbians, single parents) have? What rights should (in 02:08/out 3:50). Now watch the rest of segment (in 3:51/out 25:44) and reevaluate responses. they have? What role should the rest of us have in 4. What do you think should be done to avoid defining those rights? situations like this one, in which a child was almost orphaned? 12. If you support one’s right to reproduce and agree that the intentions of people trying to make a baby 5. We don’t regulate one-night stands or a woman’s should prevail (as in the Buzzanca case), is there a BLOODLINES

ability to get pregnant to “catch a man.” Should logical (or ethical or legal) limit to reproductive in we treat families created with reproductive tech- choice? Should we have the right to clone ourselves? nology differently? 13. What are the possible ways to create a baby? 6. Should we make a distinction between genetic, (There are at least 30. See the Can you judge a gestational and legal parents? What is the difference? good parent? role play under Making Precedent at www.pbs.org/bloodlines.) Who is a parent? 7. What responsibilities should each type of parent have? What can adoption tell us about these differences? 14. Should the way in which a child comes into the world make a difference about how it is treated? 8. Should reproductive technologies be regulated? Should legislators and/or courts answer the questions 15. How has kinship been defined by biology? Why

of who is a parent, or what kinds of families or is biological kinship so powerful? What does the atch the first part of

children there should be? If not, who should? history of reproductive technology tell us about W our changing idea of kinship? CTIVITY: A donor; an egg a surrogate; previous child of any these; infertile couple (either heterosexual or homosexual); family tree that charts the relationships, biological as well psychological. Explore words used to describe these relati all, from those of more conventional relationships) and unusual situations created by the arrangement. For instance, who are th her own, and what do they tell their friends when mother is pregnant? www.pbs.org/bloodlines

3 WHAT IS A FAMILY?2 Relates to “Who is a parent?” in BLOODLINES(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 at www.pbs.org/bloodlines. times. After all three of you go through medical and psychological screening, the couple asks you to participate 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 many of you changed your initial answer. See the Can you judge a good parent? role play under Making

Making Precedent Precedent at www.pbs.org/bloodlines.

How do we define parenthood? Traditionally we

dent legal advice and to codify their intentions the terms of have looked to biology to define parenthood, but

role play under we have also recognized exceptions to this rule. For example, in the “marital presumption,” the law does not see a necessary relationship between the this arrangement? Imagine what the contract would mean if, without it, you

n the contract and how specific do you need to be? Do include penalties biological father and the legal father of a child, nd how it compares to the way you would otherwise build a family. Does the nd how it compares to the way you would otherwise build a family. 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 where biology is not necessarily the prevailing concern include adoption, custody and inheritance law. Can you judge a good parent? QUESTIONS FOR DISCUSSION and

1. What if the ad offered “substantial compensation for time and effort”? 9. What if you lived in the same area as the couple and might run into the child someday? 2. What if you had seen firsthand a close friend or family member devastated by infertility? 10.Would you tell your children, and if so, what Commerce Theme might you say? What relationship, if any, can you 3. What if the couple wanted a donor with a high imagine between your own children and the child

See the IQ and proven athletic and musical abilities? conceived with your egg?

4. What if the infertile couple was your sister/brother 11.What if the child found you and asked for and her/his spouse? some kind of family recognition? If your own children felt some recognition? 5. What if the infertile couple was gay or lesbian? Someone making a single parent family? 12.What if the couple wanted to have an open arrangement in which they or the child could 6. What if it was your mother, who had remarried, contact you? Why might they want to? and wanted to have a child with her new spouse, but insisted the child be genetically related to both 13.What if the couple refused to tell the child, and acted of them? as if the child was the product of their own genes?

7. In any of these situations, would you tell your 14.What if the couple died? What if the child became family, friends or potential spouse? What would very sick or died? you say to a friend who insisted you had “sold” part of your body? 15.What if you were a man and had donated your sperm?

8. What if, 10 years from now, you found out that 16.What if you discovered that you were conceived you, too, were infertile? in such a “collaborative conception”? Experts advise all parties involved in donor-assisted conception to have medical and psychological screening, obtain indepen Experts advise all parties involved in donor-assisted CTIVITY: www.pbs.org/bloodlines A their agreement in a contract. Break up into groups to draft such Enact the various roles. What might you include i rights and responsibilities? Reflect on the process of making a contract for breaking the contract? Do you list each person’s language of rights/responsibilities capture what you value in a family? Why or why not? How might preserve those values were unable to build a family (e.g., gay or lesbian single parent families).

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 end of this exercise. Compare answers and calculate Eugenics (from the Greek for “well born”) is a pro- selecting for height, good eyesight or musical ability—had

how many of you changed your initial answer. See gram that tries to steer human reproduction in a the Can you pick your children? role play under specific direction. Eugenics thrived in the United Making Precedent at www.pbs.org/bloodlines. States for many years. For instance, the U.S. severely

restricted immigration from places other than hy people have children. What, if anything, would change about our

northern Europe, for fear of “contaminating” the nologies that would allow you to select children with traits (or American gene pool, and between 1907 and 1937, 32 states forcibly sterilized individuals thought to or contact lenses? Next, consider what distinguishes having children from other ng a family? Compare responses. be “undesirable.” Not until 1979 were sterilization laws fully reversed. In 1927, U.S. Supreme Court Justice Oliver Wendell Holmes spoke for the majority in a ruling that upheld the forced sterilization of a young woman thought to be re- QUESTIONS FOR DISCUSSION tarded, writing, “Three generations of imbeciles is enough.” Eugenics reached its horrific climax 1. What if your family had a history of an untestable in the Holocaust where many millions were killed genetic disease that causes horrible disability, and in the name of racial purification. that 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 these defects are thought to be genetic. What if you the basis of genes. Where would you draw the line were obligated—by medical or social pressure, or on what traits to screen for? For fatal diseases only? by your insurance—to use prenatal testing to For late-onset disorders like Alzheimer’s? For dis- screen for children with genetic birth defects? eases that are possible but unlikely? And if genes for them were found, for obesity or poor eyesight? 3. What if you wanted to use the technology but it was too expensive or otherwise not available? 8. What if you could use the technology to screen for an organ donor match for a child you already had? 4. What if you had a sibling, close friend or child with a genetic disease and you chose to screen out embryos 9. What if you lived in China or India, where great with that disease? How would you tell them? value is put on the birth of a son, and sex selection for non-medical reasons, often in the form of 5. What if the ability to screen out abnormal embryos infanticide, has been practiced for centuries? led to a decrease in social and financial support for people with disabilities? 10. What if you already had three boys and simply wanted a girl? So-called “family balancing” 6. What if your freedom to use prenatal technology is currently available from many reproductive also made it possible for other people to screen technology clinics. out embryos for reasons you consider wrong, trivial or even abhorrent? List any special opportunities your parents gave you growing up. Do think they would have tried to better prospects—by 7. Clinics can now test prenatally for nearly 1000 diseases, and the Human Genome Project may make it increasingly possible to select children on CTIVITY: A relationships if we could select traits for our children? If bring a child into the world purposes other than maki the technology been available? How would that make you feel? Consider being a parent yourself. Would you take advantage of tech the technology been available? How would that make you feel? Consider being a parent yourself. Would tutoring society) prefer? How is prenatal selection for success similar to or different from giving a child piano lessons, SAT human activities. Why might you want a child? did your parents have you? List as many reasons can—good and bad—for w www.pbs.org/bloodlines www.pbs.org/bloodlines

5 WHAT IS HUMAN?4 Relates to What is human? in BLOODLINES(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 the patent to force a public review of the U.S. Patent and Trademark Office’s (USPTO) policy on patenting living organisms. The application intentionally presses the question of what constitutes a human being when biology 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 in BLOODLINES), 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 for continued research—and patent incentives—in the area of cross-species experimentation. ion. Compare findings and make a chart of the various criteria used, taking

enough to include all humans. Explore how federal agencies and advisory groups have QUESTIONS FOR DISCUSSION What is your definition of human? Is that challenged by this patent application?

universal 1. What is your first reaction to the idea of a part-human, 9. What special privileges and rights does our society part-animal chimera? Why do you think people confer to humans? have such visceral reactions to new biotechnologies? 10. What is considered a person by the law and how 2. What social benefits/disadvantages might come is that concept important to the law? from allowing the patent? From disallowing it? 11. Why are certain people considered “protected 3. Is this an effective way to force a public review of classes” in the eyes of the law? What responsibili- at www.pbs.org/bloodlines. the USPTO’s policy on patenting living organisms? ties do we have to children, the mentally ill or people in a vegetative state? Under what conditions 4. How would you compare this research to research does the law revoke a person’s rights, for example, on embryos that are genetically 100% human? the right to vote?

Making Precedent 5. Is it possible to honor the deeply held beliefs of 12.When might a human-chimp chimera be considered those who object to all human embryo research while a person or have rights? still taking full advantage of biotechnology? How? 13. Would a cloned human be considered a person 6. Jim Finn says that he feels “more human now.” with full rights? What about the result of a enough to distinguish humans from other organisms yet

role play under How is he more human? Do you have any question human cloning experiment that went awry? —and what might make you question—whether Jim Finn is human? 14. What is a species? Has it changed with the ability specific to combine species? What is the biological importance 7. In the last decade, the USPTO has issued hundreds of the notion of species? The political importance? of patents for animals with human cells and genes. Is there a threshold number of human cells that would make an organism human? A threshold that would violate the 13th Amendment against slavery? What makes you human?

8. Does biotechnology make it easier or harder to

See the define human? Why? What are the implications? CTIVITIES: Research how humanness is defined in different disciplines—for instance, in philosophy, biology, psychology, sociology or relig psychology, biology, Research how humanness is defined in different disciplines—for instance, philosophy, are special note of which definitions, if any, grappled with the definition of human in their statements about, for instance, stem cell research. A www.pbs.org/bloodlines

You are a 25-year old medical student with a promising future—that is, until one afternoon you are hit by a 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 transplant. They also tell you about an experimental treatment that replaces your liver with a liver harvested from a genetically engineered pig (bred for transplant primarily because its organ size and function closely resemble those of humans). The treatment requires you to be closely monitored for the rest of your life and autopsied when you die. Risks include acute (and fatal) organ rejection, severe immunosuppression and contracting pig viruses. Because animal viruses can jump to humans and cause serious conditions such as AIDS and Severe Acute Respiratory Syndrome (SARS), you may also become a health risk to your loved ones, your doctors and the public at large. You can never have unprotected sex with another person, and, in all probability, your tissue

will be sampled, studied, patented and licensed to biotechnology companies when you die. variety of roles: a researcher who wants to study part-human

See the Ethics and Commerce Themes and the Is your body your own? role play under Making Precedent at www.pbs.org/bloodlines. ose represents an invention, a discovery, a product of nature or something ose represents an invention, a discovery, sk of animal viruses. Debate the pros and cons clinical trial, weighing bject? Which would/should be patentable? the field; a biotechnology CEO who hopes his partnership with hospital will lead QUESTIONS FOR DISCUSSION Patent law states that “anything under the sun 1. Would you participate in the treatment? What made by man” may be patented if it is novel, non- factors weigh most heavily in your decision? obvious and presented in the right way. In theory, patents provide incentive for research and inno- 2. What is the balance between the treatment’s vation (the inventor can reap economic reward possible benefits and the unknown health risks from his or her temporarily exclusive use of the and lifestyle restrictions it imposes? invention) and also for the dissemination of knowledge (inventors must publish their inventions). 3. As a taxpayer, how willing would you be to support the treatment for others? In Diamond v Chakrabarty (1980), the Supreme Court opened the biotech-nology floodgates by 4. Though the treatment is quite costly, you pay ruling for the first time that living organisms nothing. The biotechnology company doing could be patented. the clinical trial plans to recoup its losses by patenting cell lines derived from your immune cells. If you participate, should you have the right to share in any profit? Should human cells, 8. The sale of organs is illegal worldwide, but occurs genes or tissues be patentable? Are they? frequently as part of a black market. Why? Should you be allowed to sell your own organs? 5. What rights do you or should you have over your body? 9. Estimates suggest that more than 60,000 people who would benefit from a transplant die each year 6. Would having a property interest in your body— waiting for one. Are the risks and costs of animal owning it, so to speak—give you greater control organ transplants better or worse than a black market over what happens to it? Would it open the door in organs and the potential death of those in need? to selling such an interest, as in the trade for organs, 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? Enact an institutional review board (IRB) of experimental clinical trial at a major research hospital. Choose from CTIVITIES: chimeras; a dying patient desperate to enroll in trial; hospital chief eager keep his institution solvent and current to a profitable patent; community member concerned about the cost of high-tech treatments local health services and ri health against the institutional and community concerns values that each member represents. one individual’s Break up into groups and choose five different items from the room around you. Discuss summarize how item your group ch else. Compare and chart the similarities differences among your choices. What characteristics distinguish define each o A www.pbs.org/bloodlines

7 WHO HAS RIGHTS?6 Relates to Who has rights? in BLOODLINES(in 40:00/out 53:25)

BLOODLINES 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 10) to the rights on your list. Then compile a list of 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. explicitly stated right to privacy in the U.S. Constitution. ay be surprised to learn that the Constitution does not protect you from your aning of normal? testing. Which of these are diseases? What does it mean to be healthy or “normal”

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

1. Why do you think BNSF conducted the genetic 9. Does your state regulate genetic testing or genetic testing program? What other kinds of organiza- information? In the workplace? Anywhere else? tions might have an interest in knowing workers’ Visit Mapping the Future at www.pbs.org/bloodlines. genetic predispositions to disease? 10. If not, do you think regulation is needed? At the 2. Were Gary’s and Dave’s rights violated? How? state or federal level? What would you propose? Which rights? 11. Can you imagine any legitimate use of genetic 3. What is privacy and was it violated in this case? testing in the workplace? Under what conditions? Would you want to know, for instance, that you 4. What is discrimination and were Gary and Dave were particularly vulnerable to certain workplace discriminated against? Can you be discriminated exposures? against by being perceived to have a disability you don’t actually have? 12. If so, how would you want the company to tell you? What kinds of protections or benefits, if any, 5. Were Gary and Dave harmed by the testing? might you expect to receive? Would these differ What criteria should be used to assess harm? To from other medical protections or benefits? remedy such harm? 13. Is genetics qualitatively different from other kinds 6. How do genetic tests compare to other tests of private information, either in its meaning to required of employees? Other medical tests? people or in its power as a medical technology?

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

List all of the rights that you think U.S. Constitution grants American citizens. Compare Bill Rights (Amendments 1– 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 to this question? CTIVITIES: A you thought you had but that are not in the U.S. Constitution, and research whether your state has laws that protect you. You m you thought had but that are not in the U.S. Constitution, and research whether your state has laws protect you. You It only protects you from the government. Although some states have passed privacy protection laws, there is also no employer. and five for which you would never consider List five genetic conditions or traits that you would be willing to tested for, if we all have some sort of genetic imperfections or predispositions? Does information and testing alter the me www.pbs.org/bloodlines

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 ) that pertain to such testing, and research recent have a 50% chance of inheriting the gene from a parent who carries it. There is a genetic test for HD now th available. Do you have a duty to warn anyone of risks stemming from your patient’s disease, even if it ns might justify mandatory medical testing of any kind, and 14

means compromising confidentiality? To what extent does this depend on the circumstances? th ent to kill; or reports of child abuse in a school setting. What

Answer this question now, and then again at the end of this exercise. Compare answers and calculate how Look to the news for possible examples: infectious disease lity. many of you changed your initial answer. U.S. Constitution (4

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

1. Who should you consider your patient when not 8. Once they know their risk, do the sons have a just the mother, but also her sons are at risk? duty to get tested? To disclose their risk? To Does the fact that HD is a genetic disease make a stop working? What if they refuse to get tested difference here? for fear of being stigmatized and losing their jobs and insurance? 2. What if your patient does not want to “burden” her sons by telling them of her diagnosis? Do you 9. Are the sons’ fears legitimate? How would you have a duty to warn your patient’s children? What protect both the sons and public safety? about her siblings, nieces and nephews? 10. The sons are perfectly healthy now. Do they represent 3. Should relatives have a duty to tell each other about any greater risk than, for instance, a person with known genetic risks? What rights should relatives silent but deadly heart disease? What if the sons have? The right to stop each other from testing? begin to show symptoms? What if the sons carried The right to force each other to test? a less predictably disabling genetic risk? One that never made them sick? 4. What if some of your patient’s relatives are start- ing families and would consider using prenatal 11. Should the sons be entitled to special protection genetic testing to avoid HD? (e.g., social security disability) or subject to increased responsibilities (e.g., mandatory testing 5. What if a gene for one disease later turned out to or monitoring)? cause other diseases, as is the case with a gene tied to both heart disease and Alzheimer’s? Would you 12. Does the ability to test for genetic predispositions have a duty to tell your patient? Her sons? to future disease change one’s personal or profes- sional rights or responsibilities? Does it create 6. What if (as is actually the case in this real-life story), new rights to know (by the employer or general ine related to SARS; the effects of recent Emergency Powers Acts on individual rights; a confession psychiatrist an int

all three of your patient’s sons work as air traffic public, for instance) or not to know (by the sons)? eening of public transportation operators or DNA fingerprinting criminals. Review the Amendments to controllers in a major city? have in common? Consider whether genetic technology pushes medicine into a public health model. Next, think about what situatio expanding the reach of mandatory “suspicionless searches” in public schools. 13. Can you imagine any situation—in medicine, in privacy or medical confidentia Break up into groups to discuss what kinds of situations might justify breaching an individual’s 7. What legal or moral duties, if any, do you have the workplace, etc.—where genetic testing should to disclose the sons’ risk to their employer? be mandatory? If so, under what conditions? CTIVITY: for example, drug scr do these situations notification and quarant A court decisions www.pbs.org/bloodlines

9 BLOODLINES: TECHNOLOGY HITS HOME “A compelling and important work.” A PBS documentary and “Program Pick,” produced by Noel Schwerin Donald Kennedy, Editor in Chief, SCIENCE Offering hope to infertile couples. Curing disease by mixing human and animal cells. Assessing risk with genetic testing. Over the past few decades, the public “An immensely provocative and well-done film.” has become increasingly comfortable with a growing menu of medical procedures, Robert Sapolsky, Why Zebras Don’t Get Ulcers as concepts and treatments that were once science fiction become commonplace.

But as reproductive and genetic technologies move out of the laboratory and “BLOODLINES should serve as a model of into medical practice—as they are combined into complex applications and the way the media can contribute to expand- applied in unforeseen ways—they are playing out dramatically in true human ing public discussion of key moral questions. I stories. And they are winding up in the courtroom. wish it could be seen by everyone.” Paul Ehrlich, Human Natures A baby with five “parents” and none of them recognized by law. A patent application for a creature that would be genetically part human and part chimpanzee. A corporation secretly doing genetic tests on its workers. These “In sensitive, reflective, and sophisticated ways, scenarios are not only real, they are challenging our most fundamental beliefs the film reveals just how much the ‘future’ and establishing legal precedents that govern our future. conundrums of genetics, law, responsibility, and human dignity are already with us.” The BLOODLINES project (which includes a one-hour PBS documentary, Troy Duster, Backdoor to Eugenics an interactive web site, outreach and this guide) reveals how new life technologies are raising ethical, legal and social dilemmas as cutting-edge science intersects with the law. What does it mean to be a parent? To be human? To have rights? The BLOODLINES project tells us what is at stake when public policy trails behind medical science, and human dramas set the precedent for an uncertain future. Are we creating a world that we won’t want to inhabit?

To obtain a VHS copy of BLOODLINES, please call 800.343.5540, or email [email protected]. Please let us know how you used this

guide at [email protected].

4) B is true. So is A, except that the “mini doctor” is still in development. in still is doctor” “mini the that except A, is So true. is B 4)

30 days; they were halted after six. 3) B is true. So is A, except that the rabbit does not glow green. glow not does rabbit the that except A, is So true. is B 3) six. after halted were they days; 30

not precise enough to identify individuals. 2) A is true. So is B, except that experiments did not last not did experiments that except B, is So true. is A 2) individuals. identify to enough precise not

1) A is fact. So is B, except that the DNA patterns are patterns DNA the that except B, is So fact. is A 1) ANSWERS TO FACT OR FICTION (P.2) FICTION OR FACT TO ANSWERS

DISCUSSION GUIDE CREDITS:

Written and Produced by Noel Schwerin Backbone Media 58 Harper Street, San Francisco CA 94131 415.282.5620

Copyedited by Eliza Jewett Cover photograph by Steve Burns Underwritten by The Human Genome Project of the U.S. Department of Energy