One of the most difficult challenges in the field of bioethics is balancing the needs of individual patients against the welfare of society.
In Part II of a two-part lesson series, we ask students to do just that: to balance the interests of patients against each other and in relation to the broader population. Using resources in The Times, we have students consider complex questions, like:
• How should scarce health care resources, such as livers for transplant, be allocated?
• Should organ donors be paid?
• What limits, if any, should be placed on the field of human “genetic engineering”?
• Should lithium be added to the drinking water supply if it can be proved to lower suicide rates in the larger population?
To help students address these questions, we introduced them to guiding principles in bioethics in Part I of this teaching resource. In the suggested activities below, we ask students to take on the role of bioethicist, and apply these principles as they consider one or more of the suggested topics.
For each, we provide related reading, as well as questions for debate, writing or additional inquiry. At the end of this lesson we suggest 14 bioethics topics for further student research.
How do you teach about these issues? Let us know in the comments.
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Health Care Rationing
Sometimes society has to ration health care by necessity because particular resources are scarce. How to allocate these limited resources continues to generate significant public debate and political controversy.
Continue reading the main storyDuring World War II, limited supplies of the lifesaving antibiotic penicillin had to be rationed. Iron lungs were rationed during the polio epidemics of the 1940s and 1950s. A shortage of dialysis machines in the 1960s led Seattle’s Swedish Hospital to allocate limited life-sustaining treatment upon the perceived social worth of each particular patient. More recently, experts have debated how to allocate ventilators during a potential future flu pandemic.
Yet by far the most challenging allocation issue today relates to lifesaving transplant organs. Fewer organs are available at present than patients who require transplantation to survive. For example, the American Liver Foundation reports that over 16,000 Americans are currently waiting for liver transplants, but only 6,000 transplants are performed annually in the United States; 1,500 patients die every year while on the waiting list. How to allocate these scarce organs is a challenge for bioethicists.
Activity: Deciding How to Allocate Scarce Livers
Have students establish an algorithm for allocating scarce livers. In doing so, they should answer the following questions:
1. Should livers go to the sickest patients or those most likely to survive?
2. Should younger people be given priority over the elderly? Should there be an age cutoff for receiving a new liver, even if the transplant were likely to be successful?
3. Should patients whose liver failure is a result of their own behavior, such as recovering alcoholics with cirrhosis or suicide attempters who overdose on acetaminophen, be eligible to receive livers? Should they receive lower priority than others? Or should we view alcoholism and depression as medical illnesses and treat these patients like everybody else?
4. Should the social value of the patient ever play a role in allocating livers? Should the parents of young children be given preference? Nobel Prize winning researchers? Should prisoners be eligible? Inmates on death row?
5. Should people whose first liver transplant fails (often through no fault of their own) receive a second transplant while others are still waiting for a first?
6. The decision to give the baseball star Mickey Mantle a liver proved highly controversial. Should celebrities or public officials be given any preference if their survival might persuade other people to donate organs, thereby increasing the overall supply available?
7. One solution to the shortage of organs is to change the system by which they are procured. At present, the United States uses a volunteer based system in which potential donors “opt-in” and agree to donate organs either while alive or after death.
Activity: Evaluating Presumed Consent, Mandated Choice and Financial Incentive Systems
Other nations, including Spain and Austria, have adopted “opt-out” or “presumed consent” systems in which all people are presumed to be organ donors when they die unless they have specified otherwise. Presumed consent generates many more available organs.
Israel has adopted a system that gives first priority for organs to people who have previously agreed to become donors themselves. The state of Illinois uses a “mandated choice” model that asks all drivers renewing their licenses: “Do you wish to be an organ donor?” (Donation rates are now at 60 percent, compared with a national average of 38 percent.)
Paying donors for organs is illegal in the United States (and in every nation except for Iran), but the ban on compensation remains controversial.
Have students read brief commentaries in this Room for Debate forum on “A Market for Kidneys” by Sally Satel and Katrina Bramstedt on whether to offer financial incentives to potential kidney donors, and by Arthur Caplan and Mary Ann Baily debating the merits of a presumed consent system. Then, have students write about or discuss the following questions:
1. What are the risks and benefits of a presumed consent system? Are there some people or groups of people who might be unfairly harmed by such a system?
2. Should people be able to buy and sell kidneys like any other product? And what about other organs? It is possible to donate a part of one’s liver at considerable risk, or even one’s cornea, if one is willing to go blind in one eye. Should selling liver parts or corneas be legal?
3. If the government were to compensate donors for organs, how much should it offer? And what forms of incentives? Why not just pay donors in cash?
4. Of the various systems for increasing available organs (including presumed consent, mandatory choice, prioritizing organs for people who previously agreed to donate, and financial incentives), which (if any) would you want the United States to adopt?
5. Should people in need of organs be able to advertise requests for donors even if this means undermining the order on established waiting lists?
6. Should people be able to earmark their organs to particular individuals or groups of people after they die, such as agreeing to donate only if their organs go to a coreligionist or a fellow former military veteran?
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Genetic Screening and Cloning
Another area where bioethicists must negotiate the balance between the wishes of individual patients and families against broader societal concerns involves the advent of novel genetic and reproductive technologies.
Few fields have witnessed as rapid technological change in the past few decades — and with that change, new ethical challenges — as that of human genetics. “Genetic engineering” offers the promise of eradicating diseases like cystic fibrosis and Duchenne muscular dystrophy.
However, critics fear that tampering with the human species is unnatural and unpredictable — and may ultimately prove dangerous. Genes that cause one illness may help protect against another. For example, the genes that cause sickle cell disease (SCD) may ameliorate the symptoms of malaria.
Even more controversial are efforts to create enhanced “designer babies” that may be taller, display a particular eye color or have elevated I.Q.s. This is known as eugenics and has a particularly checkered history in the United States.
Activity: Debating the Potential Benefits and Dangers of “Genetic Engineering”
Have students read columns by Nicholas Kristof and Ross Douthat offering competing viewpoints on the merits of genetic engineering and medical eugenics. Then, have them debate whether genetic engineering should be available for any (or all) of the following cases:
1. To cure a case of Tay-Sachs disease, a degenerative disorder that kills children by the age of 5.
2. To prevent an infant from suffering from cystic fibrosis, a relatively common genetic disorder that can decrease both life expectancy and life quality.
3. To keep a child from being born with the chromosomal disorder Down syndrome, a common source of intellectual disability.
4. To reduce the likelihood of a child growing up to develop breast cancer.
5. To increase the expected future height of a male child from 5’2” to an average 5’9”.
6. To increase the expected future height of a male child from 5’9” to 6’3”.
7. To raise a child’s expected future I.Q. from a below average 75 to an average 100.
8. To raise a child’s expected future I.Q. from an average 100 to an elevated 140.
9. To create a child with blond hair and blue eyes.
Activity: Considering the Ethics of Trying to Have a Deaf Child
Have students read this article by Darshak M. Sanghavi that includes a discussion of a deaf lesbian couple who sought a deaf sperm donor to increase the chances of having a deaf child. Then ask them to write about or debate the following questions:
1. Are Ms. McCullough and Ms. Duchesneau acting ethically in seeking to have a deaf child? Would the same be true for a blind child? A child with achondroplasiac dwarfism?
2. Is there an ethical difference between a deaf person seeking a deaf romantic partner to increase the odds of having a deaf child and seeking a deaf sperm donor?
3. Is there an ethical difference between a deaf person seeking a deaf sperm donor and using genetic screening to ensure a deaf child?
4. If the couple’s child were born hearing, would it be ethical for the parents to have the doctors cut the nerves to the newborn’s ears in a painless procedure to render him deaf for life? If not, what is the difference between this approach and genetic engineering?
5. Is there a persuasive argument that intentionally choosing to have an infant with a severe genetic disease, in circumstances where that disease can be prevented by genetic engineering, is a form of child abuse? What about intentionally having a disabled child?
Activity: Discussing the Ethics of Cloning
Dolly the Sheep: A Controversial Clone
In 1997, Scottish scientists revealed they had cloned a sheep and named her Dolly, sending waves of future shock around the world that continue to shape frontiers of science today.
By Retro Report on Publish Date October 14, 2013. . Watch in Times Video »One subject that has drawn particularly strong feelings on both sides is that of human cloning. Since the cloning of Dolly, a sheep, in 1997, scientists have sought to clone human cells for therapeutic purposes, hoping to use the cloned cells to treat disease. However, some scientists also hope to clone full human beings someday.
Have students read this article about “savior siblings.” Ask them to discuss whether it would be ethical to clone a “sibling” to provide a bone-marrow transplant for a child dying of leukemia. They may wish to address the following questions:
1. Should clones have the same rights as other human beings? Should they be able to vote? To receive government benefits? To make their own medical decisions? Or are they somehow less than full human beings? Would it be ethical to buy or sell a newborn clone?
2. Is it wrong to create a child as a means to an end? Is there a risk the parents will love the clone less than the original child?
3. What will be the consequences for the clone if the original child dies? Should we fear that the parents will hold this against the clone?
4. If cloning were legal and feasible, should there be limits on the number of clones that any one person or family can create?
5. What if the parents didn’t want to harvest bone marrow, but instead created the clone to obtain a kidney or a cornea for the original child? Should this be permitted?
Activity: Considering the Ethics of “Designer Babies”
Most scientists agree that we are still a long way from the “designer babies” envisioned in books like “Brave New World” and films like “Gattaca.” Even if such babies become technologically possible, many bioethicists see them as alarming.
In the article above, Marcy Darnovsky, executive director of the Center for Genetics and Society, raises concerns about “genetic upgrades,” which might lead to increased inequality. In this exercise, have students address one particular potential “upgrade” — increased intelligence — and debate whether, if feasible, it should be legal. (For the sake of argument, the proposed technology might raise a baby’s potential I.Q. 30 points, up to a maximum of 150 I.Q. points.)
Students may wish to consider the following questions:
1. Will having smarter babies, even only a few more of them, lead to improvements for society as a whole because these babies might become future Thomas Edisons or Albert Einsteins whose genius leads to technological advances for all of us?
2. How is letting the rich buy smarter babies different from allowing them to pay for private schools, SAT tutors and elite college educations?
3. Is genetic cognitive enhancement any different in kind from cosmetic surgery?
4. Should society allow such enhancement, but make it free to all? Could the technology not then lead to reductions in social inequality?
5. Does permitting such enhancement stigmatize or unfairly disadvantage those people of ordinary intelligence who are already born? How should their welfare be taken into account?
6. Does permitting such enhancement perpetuate misguided notions about the value of natural intelligence over social circumstances, character and hard work?
7. If such enhancement is permitted, can it be said to truly be optional? Eventually, enhanced individuals are likely to crowd out the non-enhanced in education institutions and the job market. Won’t parents feel compelled to choose enhancement merely to give their offspring a fair chance at such opportunities?
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Lithium in the Drinking Water
Lithium is a naturally occurring element that is used in high doses to treat psychiatric illnesses including bipolar disorder. In some areas of world, including parts of the United States, trace amounts of this same element are present in the drinking water. As Anna Fels explains in the Opinion piece “Should We All Take a Bit of Lithium?”, multiple studies have shown a correlation between the presence of lithium in drinking water and lower rates of suicide.
If scientists ultimately establish that trace amounts of lithium in the water do reduce suicide rates without significant side effects — and more research is certainly needed — the question then arises whether it would be ethical to add trace quantities of the element to the water supply.
A similar effort to add fluoride to the water supply to prevent tooth decay generated considerable outcry in the 1950s, but was eventually implemented widely. Unlike fluoride, lithium acts on the brain, and supplementation is likely to prove even more controversial.
Activity: Debating Adding Lithium Supplements to the Water Supply
Have students read Dr. Fels’s column and then divide them into teams to debate a proposal to supplement the water supply with lithium. They might consider the following arguments:
In favor of supplementation:
1. Suicide takes the lives of more than 42,000 Americans every year and drastic steps are sometimes needed when confronting a major public health crisis.
2. Many Americans already live in areas with lithium occurring naturally in the drinking water and few are demanding that it be removed; in fact, few even know that it is present.
3. People who object to consuming lithium-supplemented water can always resort to purchasing bottled water, digging wells or obtaining alternative sources. If many consumers wish to opt out, a supply will inevitably arise to meet the demand.
4. The water supply exists for the common good and should be managed in a way to help as many people as possible. If experts determine that the benefits of lithium supplementation outweigh the harms, progress should not be impeded by a minority of objectors.
5. The water supply is not natural. It already is purified and adulterated in many ways; this would just be another step in the complex process of preparing the water for market.
Against supplementation:
1. While trace amounts of lithium may reduce suicide rates, one cannot be certain that its presence does not impose unknown negative side effects — possibly subtle neurological changes difficult to measure, such as a slight reduction in creativity.
2. Tampering with the water supply is “unnatural” and the default should be to preserve natural resources in their pristine state.
3. Consumers can always buy water with trace amounts of lithium in it; there is no need to impose this burden on unwitting or unwilling water drinkers.
4. While safe for humans, the supplemented water might pose risks to other species, such as through runoff or sewage water, that will be difficult to measure until it is too late.
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Going Further: Individual Research Projects
Have students prepare presentations on challenging issues in contemporary bioethics. Make sure they address both sides of each topic. Possible questions, and links to Times materials, include the 14 topics below:
1. Should pediatricians be allowed to refuse to treat families that are unwilling to vaccinate their children against communicable childhood diseases like measles and diphtheria?
2. Should doctors honor a request by an adult child not to tell an elderly parent she has cancer because the parent reportedly “wouldn’t want to know”?
3. Should religious minorities be able to opt out of the concept of brain death and keep relatives on life support until cardiopulmonary death?
4. Is it ethical to perform a symbolic “female circumcision” that involves a harmless nick in order to prevent a couple from seeking more drastic female genital cutting for a newborn?
5. Is it ethical to use medication to hasten the deaths of infants who are likely to die within weeks anyway as a result of untreatable diseases?
6. Would it be ethical to clone Neanderthals to learn more about human origins?
7. Should patients be able to learn their genetic risk of Alzheimer’s disease when no cure is available and doing so might unmask the risk for other relatives?
8. Should elective limb amputation (apotemnophilia) be permitted?
9. Should researchers be able to perform medical research in the developing world that they could not in the United States as long as they leave the subjects better off?
10. Should genetic discrimination be legal?
11. Should convicted sex offenders be allowed to undergo voluntary chemical castration in return for shortened prison sentences?
12. Should employers be permitted to hire only nonsmokers?
13. Is it ethical to force-feed competent prisoners to keep them from intentionally starving themselves?
14. Is it ethical to genetically engineer mutant mosquitoes in the effort to combat the spread of infectious diseases?
For more information on bioethics, see these TED Talk videos.
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Jacob M. Appel is a psychiatrist and bioethicist who has taught bioethics to both high school students and undergraduates.
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