In Blanche’s scenario, the law can address the predicament in one of two ways: it can allow her to respond to market forces and refuse to pay African American donors, or it can compel her to continue to pay African American donors—knowing that their sperm will go unused but declaring that such wasted semen is simply a cost of doing business and a necessary, albeit inconvenient, by-product of living in a nondiscriminatory society. Any third alternative aimed at altering the underlying market forces, such as denying recipients the right to choose the race of their sperm, would likely prove politically unpalatable and economically unviable, at least in the short term—no matter how just it might appear in theory.
With regard to selecting donors, sperm banks remain largely unregulated in the United States. Their status under civil rights laws has never been fully clarified. Are they more like a restaurant or a store, legally and ethically required both to employ and to serve individuals of all races? Or is donating sperm more like joining a private club? And even if civil rights laws apply, does consumer demand in this distinctive field create a compelling exception to the general rule favoring race-neutral hiring? A Shakespearean theater need not audition white actors for the part of Othello. Maybe a similar exception ought to apply regarding sperm donation.
At least one effort has been made to create a “whites-only” sperm bank; in 1996, billionaires Floyd and Doris Kimble opened a Washington State sperm bank that refused to accept donations from African Americans. And until 2013, Calgary’s Regional Fertility Program—a private sperm repository—permitted recipients to choose donors of only their own race.
Whether or not Blanche’s sign is legal or ethical, it may have an unexpected effect on her business: one can imagine many white customers, seeking white sperm, who nonetheless feel uncomfortable, or downright unwilling, to patronize a business with a no african american donors sign out front.
63
“She Can Share a Room with a Man”
St. Dymphna’s Hospital is a small 120-bed hospital serving a predominantly rural population. Phil brings his elderly aunt Jenny to the emergency room after she suffers shortness of breath. She is diagnosed with pneumonia and told she will be admitted to the hospital as soon as a bed becomes available. Forty-eight hours later, on Sunday night, she is still waiting in the crowded emergency room, because the hospital is reportedly full.
Phil is a vigilant observer, and he notes that his aunt has been waiting longer than any other patient. He overhears one of the senior nurse managers, Ms. Ratched, on the phone discussing the “bed situation.” She says: “They’re telling me we have an open bed for a male patient, but none for any female patients until someone is discharged.” Phil approaches the nurse manager and says, “My aunt is ninety-two years old and very ill. I don’t care if she’s in a room with a man or a woman. We’ll just draw the curtain. I want the first bed available.” The nearest other hospital with available beds is more than six hours away by ambulance.
No law prevents Ms. Ratched from admitting a female patient to a double room already occupied by a male patient. However, in practice, the hospital has never allowed “coed” hospital rooms before, and, since it is Sunday night, Ms. Ratched is the highest-ranking administrator on-site. She calls upstairs and learns that the male patient in the room with the available bed is a ninety-one-year-old double amputee in a coma. No family is involved in his care.
Should Ms. Ratched make an exception to the historic practice of the hospital and temporarily admit Aunt Jenny to a room with a male patient, or should Aunt Jenny be asked to wait until a “female room” becomes available?
Reflection: Gender-Blind Hospital Rooms
Single-gender hospital rooms have historically been the norm in the United States. Exceptions include emergency rooms and intensive care units, which are well trafficked and generally make no effort to segregate men and women. Such separation serves no medical purpose. In fact, when hospitals are crowded, it can delay admissions to the medical floors from the emergency room. However, single-gender hospital rooms comply with the customs of a large segment of society, and some people may be uncomfortable sharing a room with a patient of another sex. Parts of Canada, most notably Alberta, have permitted coed hospital rooms since 2005. Such a policy can operate in three distinct ways: (1) all patients can be compelled to accept the first room available, no matter what the gender of the other occupant; (2) patients can be assigned to gender-blind rooms unless they overtly object to sharing a room with a person of the opposite gender; or (3) patients can be asked their preferences on the matter without prompting, and only those who express their willingness will be assigned to gender-blind rooms.
Opponents of gender-blind rooms often resort to arguments based on tradition or what is known as “the wisdom of repugnance,” a term coined by Leon Kass to explain things that are considered to be morally wrong even if it is difficult to articulate why they are morally wrong. Sometimes this is referred to as the “yuck factor.” Similar arguments, often cloaked in religion, are used in some nations to keep women and men from sitting together at weddings or on buses. Other opponents of coed rooms express fears for the safety of female patients, including the prospect of sexual assault, although no such cases have been reported in facilities that have adopted this approach. (Similar objections are frequently raised by those who oppose allowing transgender individuals to use restrooms that match their gender identities.) No safety concerns are likely to apply in cases like Aunt Jenny’s, where the male patient is comatose.
In cases where both parties are willing, one is hard-pressed to advance a plausible argument against such arrangements. A more complex situation arises where one of the patients is willing but the other patient is not able to express a preference—such as in Ms. Ratched’s dilemma. In short, she is asked to decide what the default option should be in the absence of either objection or consent from the patient.
One other factor should play into Ms. Ratched’s thinking. She must decide to what degree to rely upon long-standing policies and when to carve out an exception based upon distinctive circumstances. Hard-and-fast rules may mete out injustices on occasion, but they ensure a uniform fairness in the application of controversial policies. Those who argue for such rigid standards value the rule of law and would want the hospital to change its policy rather than to permit Ms. Ratched to single-handedly circumvent it. In contrast, allowing for discretion often achieves justice in the short run but may permit arbitrary decisions in other cases or may set troublesome precedents that lead to injustice in the future. In addition to deciding whether admitting Aunt Jenny to a male patient’s room is the right thing to do at the moment, Ms. Ratched must decide whether doing so is worth the consequences of such a decision for other patients in the future.
64
Healthy Workers Only
A private hospital is concerned that smoking and obesity among its employees are driving up its healthcare costs. The hospital board enacts a new employment policy: all new hires must refrain from smoking and must maintain a healthy body weight. The facility plans to conduct random urine tests twice each year to screen for nicotine and to conduct annual weigh-ins. All employees found in violation of hospital policy will be given one warning and an opportunity to engage in smoking-cessation and weight-loss programs. If they again fail to meet either standard, they will be dismissed.
Should this policy be legal?
Reflection: Employee Rights
The Centers for Disease Control estimates that tobacco smoking costs the US economy more than $300 billion annually, while a 2012 study in the Journal of Health Economics attributes 21 percent of the nation’s healthcare costs to obesity. Much of this burden falls upon employers through increased insurance premiums and lost worker productivity. In an effort to avoid such expenditures, businesses and nonprofit organizations have increasingly turned to “tobacco-free” and “healthy-weight” hiring policies. When several large US corporations—including Alaska Airlines—stopped hiring smo
kers in the 1980s, a backlash led twenty-nine states to pass right-to-work laws for tobacco users, although many included exceptions for healthcare institutions and nonprofits. A range of entities, from hospitals to fire departments, have since adopted such restrictions and have met with little resistance. Citizens Medical Center in Victoria, Texas, now requires all new hires to have body mass indexes under 35 (normal weight is a BMI of 18.5 to 25). These policies raise fundamental questions about the balance between the prerogatives of employers and the privacy rights of employees.
Arguably, one of the major benefits of modern work life is its inability to reach into the home. Most employees no longer live in “company towns”; their bosses do not track their church attendance or regulate with whom they fraternize. Yet the rise of social media, such as Facebook and Twitter, has eroded some of these barriers. In an effort to protect their own images, companies can—and sometimes do—fire workers who post offensive statements online. Regulating employee health reflects another way in which public-private barriers are breaking down. In addition to economic concerns, employers may have genuine worries about the public image conveyed by an unhealthy employee, such as a physician or a nurse who posts photographs of herself smoking cigarettes on the internet.
What some well-intentioned individuals view as an attempt to encourage healthy living, critics see as an effort to demonize those who live unhealthy lives. Opponents also express fears that such policies will fall disproportionately upon low-wage workers. In fact, the New York Times reported that of the first fourteen applications turned down for positions at University Medical Center of El Paso under a smoke-free hiring policy, “one was applying to be a nurse and the rest for support positions.” After a European Union court ruled in favor of Karsten Kaltoft, a childcare worker who claimed obesity to be a disability after being fired for his weight, a British study revealed that nearly half of one thousand British employers would not hire overweight applicants, often believing them to be lazy and incompetent. Policies like that proposed by the hospital in the scenario at the start of the chapter risk furthering such stereotypes.
These issues have proven among the most divisive in healthcare—often pitting leading advocacy groups against each other. For example, the American Lung Association and the American Cancer Society refuse to hire smokers; in contrast, another major antismoking organization, the American Legacy Foundation (ALF), strongly opposes such policies. As the ALF’s chief counsel told the New York Times in 2011, “We want to be very supportive of smokers, and the best thing we can do is help them quit, not condition employment on whether they quit. Smokers are not the enemy.”
65
Will I Get Alzheimer’s?
Lois is an investigative reporter for a major newspaper. Her editor, Paul, asks her to write a story on genetic testing for Alzheimer’s disease. Paul has read that there is a genetic test that can reveal whether one has an elevated risk of suffering from this form of dementia in later life. He wants Lois to undergo the test and print her results in the newspaper.
Lois learns that a person inherits half of her known genetic risk for the disease from each parent through what are called APOE genes—and that this accounts for some, but not all, of a person’s risk of developing Alzheimer’s disease in old age. That means that learning one’s own risk, if it is high, can also reveal, or “unmask,” whether one’s parents stand at risk. Lois is only twenty-eight years old, and her parents, both in their fifties, are still living. Fortunately, they reside in a distant city and rarely read her newspaper columns.
Is it ethical for Lois to publish her test results, allowing for the prospect that her parents will somehow learn of these results and possibly their own increased risk of this incurable, debilitating ailment?
Reflection: Genetic Testing and Privacy
Alzheimer’s disease, which affects more than five million predominantly elderly Americans, remains one of the most feared diagnoses anyone can receive. Treatments are limited and merely slow the inevitable progression toward dementia and death. APOE gene status reveals a percentage of the likelihood of developing the disease; individuals carrying two high-risk variants of the gene (known as APOE4s) are approximately fifteen times more likely to develop Alzheimer’s disease than those with two average-risk variants (known as APOE3s). Yet unlike with more traditional genetic conditions, such as cystic fibrosis or muscular dystrophy, where the genetic mutation automatically leads to the disease, the results for Alzheimer’s are not carved in stone. Some patients with two APOE4 alleles remain cognitively intact into old age. Some patients with two APOE3 alleles develop Alzheimer’s disease. Scientists do not yet know why.
Now that commercial testing is available for APOE status, some people choose to avail themselves of this information. Ethicists have expressed concerns that patients who learn of their high-risk status may suffer unnecessary psychiatric consequences, such as depression. However, data from Huntington’s disease patients suggests that positive genetic testing does not actually lead to higher rates of depression or suicide. Rather, it may afford relief (whether merited or not) to some, while allowing others to plan ahead for their future health. (Of note, I had my APOE genes tested for Alzheimer’s risk, which turns out to be average, and have written about my experience.) Yet prominent scientists, including psychologist Steven Pinker and geneticist James Watson, have insisted on not finding out their APOE status even while revealing the remainder of their genomes to the public. Nonetheless, in a rather concerning article in the European Journal of Human Genetics, geneticist Dale Nyholt and others reported that Watson’s status could likely be predicted on the basis of other DNA markers he had made available.
Lois faces a more challenging dilemma than merely determining her own status. She must also decide whether to share her status in such a way that doing so could affect her parents. Such unmasking is a common risk with many genetic disorders. Family members have little recourse to prevent such disclosure—even though it can have significant repercussions for their own lives. Some commentators have raised the possibility that in cases of rare, incurable genetic disorders, such as Machado-Joseph disease, the community of patients might deserve a say in whether researchers ever develop a genetic test for the disease in the first place. If no test exists, there is no risk of unmasking. For more common diseases like Alzheimer’s, such a majority veto or “majority right not to know” is not realistically feasible.
66
“I Want to Live to Meet My Child”
Wilbert is a thirty-year-old man with a newly diagnosed pancreatic tumor. His wife is three months pregnant, and there is the possibility, estimated at 10 percent, that an extremely expensive new drug will extend his life long enough for him to witness the birth of his first child. He relies on Medicaid for his healthcare coverage and cannot afford private insurance.
The leaders of the state in which Wilbert resides have recently passed legislation that prevents its Medicaid program from paying for chemotherapy for patients with under a 5 percent chance of surviving five years. The funds saved have been earmarked for preventive medicine, expanding such coverage to one hundred thousand working-class children. Economists estimate this approach will save hundreds of lives every year. In agreeing to the law, the governor required the state legislature to establish an emergency review board—a three-member commission that can override these rules and provide funding for such chemotherapy under “extraordinary circumstances.” Wilbert petitions the board for an exception. He writes: “I know my chances of long-term survival are extremely low, but I have a realistic prospect of living to see my first child born—and that would mean the world to me and my family.”
Should the emergency review board authorize an emergency override in this case?
Reflection: Healthcare Rationing
Healthcare rationing, in some form or another, is unavoidable. The alternative—covering all possible healthcare costs for every living American—would vastly increase the percentage of gross national
product devoted to medicine at the expense of other vital budget items, such as education, defense, or consumer goods. Such a dramatic spike in expenditures would likely prove politically intolerable. Instead, as columnist David Leonhardt wrote in the New York Times, “The choice isn’t between rationing and not rationing. It’s between rationing well and rationing badly.” At present, our system rations badly. Princeton University’s Peter Singer, in another New York Times column, compared the cases of patients refused extremely expensive kidney cancer treatments by their insurers, denials which drew national outrage, with that of a woman from Atlanta who suffered from a ruptured brain aneurysm because she could not afford a relatively inexpensive blood-pressure medication. Logically, whatever total funding society wishes to expend on prevention and treatment, common sense suggests paying for the Atlanta woman’s medication before that of the kidney cancer patients.
Oregon implemented a “rational” system of partial rationing in the 1990s that remains in effect. Led by then-governor John Kitzhaber, a former emergency room physician, the state decided to expand the number of working-poor patients eligible for Medicaid. In order to do this, with limited funds, the state stopped paying for certain expensive treatments under the same program. Healthcare economists estimated that, in the long run, this approach would save lives and improve overall well-being through increased preventive care and expanded access. Yet such a system created “visible” victims, who suffered the short-term consequences necessary for society’s long-term benefit. In 2008, lung cancer patient Barbara Wagner’s request for the drug Tarceva, which cost $4,000 a month, was rejected by the Oregon Health Plan. Kenneth Stevens Jr., of the Physicians for Compassionate Care Education Foundation, reports that according to Oregon’s rules, Medicaid “will not cover the cost of surgery, radiotherapy or chemotherapy for patients with a less than 5% expected 5-year-survival.” The media and conservative organizations drew attention to the ironic fact that while Wagner could not receive cancer treatments, she was eligible for state-funded palliative care and physician-assisted suicide. (The drugmaker Genentech agreed to provide Tarceva for free; Wagner died in October 2008, shortly after her first dose.)
Who Says You're Dead? Page 17