Who Says You're Dead?

by Jacob M. Appel

  Since 1989, when, at the height of the crack cocaine epidemic Florida’s Miami-Dade County set up the nation’s first “drug court,” judges have increasingly relied upon diversion programs to force addicts into treatment. More than three thousand drug courts now exist. Proponents note that three-quarters of arrestees who complete mandatory rehab programs remain arrest-free for two years, saving taxpayers an average $6,744 per participant. In contrast, critics argue that these programs give judges the power to make medical decisions for patients—and that these decisions are often misguided, such as denying methadone maintenance to recovering heroin addicts. Whatever their merits or disadvantages, drug courts take action only in cases of individuals charged with criminal offenses such as drunk driving and dealing drugs. The chronic alcoholic like Clay generally does not fall under their jurisdiction.

  More recently, several states have enacted laws to allow family members of chronic alcoholics and drug users to petition the courts to commit their loved ones to treatment. Kentucky’s statute, Casey’s Law, adopted in 2004, is named after twenty-three-year-old Casey Wethington, who died of a drug overdose. It allows for judges to mandate rehab at the request of friends or family for anyone “suffering from an alcohol and other drug abuse disorder [that] presents a danger or threat of danger to self, family, or others if not treated.” The only caveat is that the petitioner must agree to pay for the costs of treatment. Similar legislation has been enacted in Ohio. Indiana’s Jennifer Act of 2015 allows for involuntary civil commitment for substance abusers in cases of demonstrated “dangerousness” or “grave disability,” but requires family or doctors to identify both a facility willing to accept the patient and a guaranteed source of payment. A number of other states allow more limited interventions, but the majority of states leave the families of addicts without recourse. Hospitals are generally powerless to act in the absence of interest on the part of family or friends—although many chronic substance abusers have no family or friends to advocate for them. In 2013, Australia’s Northern Territory established a program, similar to the one advocated by Dr. Livingston in the case of Clay; mandatory rehab is now a possibility there for anyone taken into protective custody by police for alcohol intoxication three times during a two-month period.

  Opponents of mandatory rehab worry about criminalizing a medical condition. Some also justify their opposition on the grounds of individual autonomy: If Clay does not want to stop drinking, what right does society have to force him into sobriety? Pleas for autonomy may prove less persuasive when the taxpayers are picking up the tab for his conduct. An alternative, more radical approach might allow Clay to continue drinking—but, after multiple warnings, to cut off his access to alcohol-related emergency services.

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  A Modern Typhoid Mary

  A previously unknown virus appears in a major US city one summer. In most patients, the symptoms resemble those of a bad flu—fever, headache, some nausea. But a small number of patients, especially young children, develop significant internal hemorrhaging. By August, city health officials have uncovered ninety-three cases, six of which have proven fatal. Why some people become seriously ill but most do not remains a medical mystery.

  Public health workers trace the disease back to Sandra, a thirty-year-old day-care worker, who has had contact—direct or indirect—with all of these patients. It turns out that Sandra “carries” this rare, untreatable virus in her bodily fluids, although she herself is entirely asymptomatic. Even casual contact with an object which Sandra has touched over the past several weeks can lead to infection.

  Doctors want the city to quarantine Sandra in a hospital room until a treatment can be devised. However, there is no timetable for researching such a remedy. In fact, none is even under development, since Sandra is the only person in the world who is known to carry the disease, and isolating her will likely remove the threat to everyone else. Not surprisingly, Sandra objects.

  Is it ethical to quarantine Sandra, who has done nothing wrong, indefinitely?

  Reflection: Mandatory Quarantines

  Few if any issues display the conflict between individual rights and the public welfare as starkly as that of mandatory quarantine. The term itself originates from the Italian quaranta giorni, reflecting the forty days that ships were isolated during the era of the Black Death, a European plague pandemic that lasted from about 1346 to 1353. In the United States, patients suffering from leprosy were isolated in “colonies,” such as those at Kalaupapa, Hawaii, and Carville, Louisiana. During the yellow fever epidemics of the nineteenth century, victims were isolated in many US cities; one such episode forms the basis for the Bette Davis film Jezebel (1938). More recently, efforts to detain patients with drug-resistant tuberculosis and Ebola virus have garnered national headlines. From 1986 to 1994, Cuba forcibly confined patients with HIV to sanatoria. Large scale “group” or “collective” quarantines were enforced upon entire communities, such as the smallpox restriction imposed in sections of Muncie, Indiana, in 1893 and the seclusion of the Chinese population of San Francisco in 1900 due to exaggerated concern about plague.

  However, the most celebrated case of quarantine is likely that of Mary Mallon (1869–1938), a.k.a. Typhoid Mary, an asymptomatic carrier of typhoid fever. Mallon, an Irish American kitchen worker, was kept in forced quarantine for twenty-three years on North Brother Island in New York City’s East River. Her custody is recounted in historian Judith Walzer Leavitt’s book Typhoid Mary: Captive to the Public’s Health.

  The United States allows forcible quarantine for the following diseases: cholera, diphtheria, tuberculosis, plague, smallpox, yellow fever, viral hemorrhagic fevers (e.g., Ebola), pandemic flu, and severe acute respiratory syndromes (SARS). Some of these diseases are easily treatable; others have a short incubation period. Few ethicists are seriously troubled by the short-term quarantine of genuinely contagious individuals. Most reasonable people would accept such quarantine for themselves voluntarily in order to protect the public. Far more troubling are the rare patients who require long-term isolation—whether because they are untreatable, asymptomatic carriers such as day-care worker Sandra or because they refuse to engage in necessary care.

  In Sandra’s case, she is being asked to withdraw entirely from society—in essence, to become a hospital-bound prisoner through no fault of her own. In theory, one might compensate quarantine patients for their inconvenience, such as a year spent in “tuberculosis jail,” but no amount of money would likely induce most people to enter indefinite isolation.

  If society expects Sandra to comply with this isolation for the public good, it also has an ethical duty to expend considerable effort and resources upon finding a treatment for her condition. How much should society spend? It is possible to estimate what amount Sandra’s quarantine will save the public in healthcare costs and economic losses. A strong philosophical argument exists for spending all of those funds on trying to cure her, although political realities make such a vast expenditure, even if ethically appropriate, highly unlikely.

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  Beyond 23andMe

  A female hospital employee, Dahlia, has been the victim of a violent sexual assault inside a stairwell. She dies without regaining consciousness. Fortunately, special victims unit investigators have been able to obtain a DNA sample from her attacker’s semen.

  The authorities are aware that all staff, patients, and visitors to the hospital must either swipe their employee identification cards or display a picture ID at the entrance, which is photographed and recorded in the security logbook. In an effort to identify Dahlia’s attacker, the police request the names and contact information of all male staff, patients, and visitors to the facility over a two-week period prior to the attack. While they cannot force these individuals to provide DNA samples, they plan to request a sample from each of them—and would take a closer look at the alibis of those who refuse to provide a cheek swab.

  Is it ethical for the hospital to provide such data to the polic
e?

  Reflection: DNA Dragnets

  The first DNA sweep, or DNA dragnet, occurred in Great Britain in 1987. Efforts by the Leicestershire police to find a two-time rapist and murderer led indirectly to the arrest of Colin Pitchfork, a twenty-seven-year-old baker who boasted of having submitted a false DNA sample during the course of the testing of more than four thousand local men. In 1996, Oklahoma authorities conducted an unsuccessful DNA dragnet to find the killer of aspiring ballerina Juli Busken (although her murderer was later identified and convicted on the strength of DNA evidence). While such dragnets are not yet commonplace in the United States, they have been used to address high-profile murders in Louisiana, Florida, Massachusetts, and elsewhere. These sweeps increase the likelihood of arresting the perpetrators of violent offenses such as the attack on Dahlia. Moreover, the results are extremely accurate at connecting alleged assailants to crime scenes. If the authorities find whoever murdered Dahlia, his arrest would both prevent him from striking again and, in theory, would deter others from committing such attacks.

  DNA dragnets are not without significant privacy concerns. Laypeople depend upon law enforcement authorities to ensure that their DNA, once harvested, is stored safely and will not be used for purposes other than solving specific crimes. Should such sweeps become more frequent, incidents of mishandling may prove inevitable. Moreover, even when conducted with appropriate safeguards, DNA dragnets can unwittingly reveal long-hidden family secrets. Such was the case in Italy, where a dragnet searching for the killer of schoolgirl Yara Gambirasio led to an unexpected revelation of false paternity. Yet since the DNA stored by the FBI in what is known as the Combined DNA Index System (CODIS) contains different markers from those used by medical geneticists or commercial genealogy companies like 23andMe, it was long thought that linking dragnet DNA to other samples was impossible. In 2017, Michael Edge of Stanford University and his colleagues published an article in the Proceedings of the National Academy of Sciences that proved otherwise. They showed that CODIS samples could be correlated with those in other data sets—raising the concern that a privacy breach of dragnet-obtained DNA could lead to the exposure of genetic data related to medical risks.

  Consensual dragnets may not be as “voluntary” as they appear, as those who refuse to give a DNA sample will likely be subject to extensive scrutiny, even though many plausible reasons other than guilt—from privacy concerns to fear of the police—might lead a law-abiding citizen to refuse to participate. In Dahlia’s case, relying upon the hospital’s access data complicates the situation even further. Most people generally believe their visits to hospitals, either as patients or as guests, to be private matters. If the public feared such data were being mined by the police, the result could be a chilling effect on the entire healthcare system. Sick people, concerned for their privacy, might delay seeking medical care. Friends and relatives might avoid visiting their hospitalized loved ones.

  An analogy can be drawn to the “library records provision” of the Patriot Act of 2001, which allowed the federal government to track access to library materials as part of its so-called “war on terror.” until it expired in 2015. Advocates claimed the policy would capture terrorists. Critics charged it would deter the conduct of legitimate library users. Of course, if people were to fear that a rapist and murderer remained on the loose in the hospital, this concern would also be likely to chill their behavior.

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  Requiring a DNA Test

  Infantile Tay-Sachs disease is a rare genetic disorder of childhood that usually appears within the first sixth months of life and is almost always fatal by age five. Children born with the disease become blind, deaf, and paralyzed. Dr. Bovary, a pediatrician and the US surgeon general, is particularly interested in eradicating this scourge.

  Tay-Sachs is what is called a recessive genetic disorder. In order to develop the disease, a baby must receive a defective gene from each of his parents. Dr. Bovary wants to institute mandatory genetic testing for everyone of reproductive age—conducted as a condition for receiving a driver’s license, passport, or government ID card. The simple test involves a swab of the cheek and is without medical risks; the government will not test for any other diseases, and plans to destroy the samples after testing. People will have access only to their own results.

  “What people do with this information is entirely up to them,” says Dr. Bovary. “They can choose partners who don’t have the defective gene. They can choose not to have children. They can adopt. They can abort. They can even have babies with the disease, if they so choose. All I’m asking is that people know whether their potential children are at risk.”

  Is such a mandatory testing program ethical?

  Reflection: Mandatory Genetic Screening

  Screening of newborns for genetic disease has occurred since the 1960s, when the first protein-based tests for phenylketonuria emerged. As of 2018, every state offers some form of disease-testing program for infants, and forty-eight of these programs are mandatory, although forty-three states permit parents to opt out under certain circumstances. The diseases covered vary. Most are treatable with immediate or early intervention. Much of the funding for screenings comes from the federal government through the Newborn Screening Saves Lives Reauthorization Act of 2014. These screening programs generally draw blood samples from newborns’ heels; the blood has historically been stored for research purposes. A campaign against such sampling, led by Minnesota activist Twila Brase, has drawn national attention. Brase is concerned that, in the future, such blood samples may be used to predict gene-based character traits, such as a propensity for violence, which she views as a threat to privacy and parental autonomy.

  For many newborns, genetic testing arrives too late. Infants afflicted with Tay-Sachs disease are without medical recourse. The only way to avoid the suffering inherent in the disease, according to mandatory screening advocates, is to prevent these children from being born or conceived in the first place. Voluntary genetic-testing programs for prospective parents are widespread, such as the much-touted Dor Yeshorim, which means “Upright Generation,” that serves Orthodox Jews, who happen to be among the groups with a high incidence of Tay-Sachs disease. Since 2004, Saudi Arabia has mandated health checkups for betrothed couples, and claims that 165,000 participants have broken off engagements as a result of genetic incompatibilities—but the true extent of genetic testing in that nation is unclear.

  In the United States and western Europe, strong resistance to mandatory testing exists. Among opponents are some disability rights advocates, who fear a slippery slope that would lead to testing for blindness or autism, and libertarians, who raise broader concerns about privacy, autonomy, and even eugenics. These opponents often see a thin line between informing people of their genetic status and forcing them to make certain reproductive choices—like not having children or not mating with others who share their genetic defects. If most couples choose not to have infants with genetic diseases, they say, those who do have them will likely face social stigma. Others fear testing will increase abortion rates. Even for many bioethicists who favor abortion rights, choosing whether or not to have a child with a particular disease may be viewed as highly controversial. Emily Rapp’s memoir The Still Point of the Turning World describes her deeply meaningful relationship with her son, Ronan, before his death from Tay-Sachs in 2013.

  Supporters of mandatory testing generally advocate for discrete, circumscribed programs looking for specific diseases like Tay-Sachs. Some note that the stigma surrounding having a baby with a debilitating, universally terminal disease may well be appropriate—if such an outcome can easily be avoided. Some bioethicists go as far as describing that choice as a form of child abuse, noting that no parent would ever be permitted to inflict similar symptoms on an infant after birth.

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  “I’d Rather Die Than Abandon My Hunger Strike”

  The inmates at a maximum-security prison have gone on a hunger strike to protest their liv
ing conditions. They claim overcrowding, chronic mistreatment by corrections officers, and a recent ban on tobacco. After six weeks forgoing food, one of the prisoners, Tony, is so nutrient-deprived that he may die without nutritional intake. Tony is awake and alert, and states, “I’d rather die than abandon my hunger strike.” He adamantly refuses to accept artificial nutrition.

  Is it ethical for the prison doctor to sedate Tony and then “feed” him through a nasogastric tube that would allow nutrients to be pumped directly into his stomach?

  Reflection: Force-Feeding Prisoners

  Hunger strikes have been used by protesters and prisoners for centuries, including celebrated fasts by female suffragettes in the early twentieth century, Mahatma Gandhi during the struggle for Indian independence, and Irish Republicans in 1981. Prisoners often have minimal autonomy, and threatening self-starvation is one of the few means of civil disobedience available to them. Many Americans are aware that the US government forcibly fed so-called “enemy combatants” detained at Guantanamo Bay during the 2000s. Far fewer realize that similar techniques are used against ordinary prisoners in the US criminal justice system. Although the issue drew some public attention in 2013 when US District Court judge Thelton Henderson granted prison doctors in California the authority to force-feed hunger striking convicts, the face of the movement against such force-feeding for years was Connecticut inmate Bill Coleman. Coleman, who refused food to protest what he believes was an unjust rape conviction, was strapped down regularly for involuntary tube feeds from 2008 to 2014. His strike ultimately ended when he was deported to his native England at the conclusion of his sentence.