June 1, 2007

The Dark Side of Public Health

The history of public health efforts in the United States in many ways is a story of great accomplishment. In the 19th century, public health officials constructed urban water and sanitation systems to protect the public against filth. With the discovery of germs, they turned their attention to transmissible diseases and instituted measures to inspect and quarantine ships. The original name of the U. S. Public Health Service, in fact, was the "Marine Hospital Service." (It became the Public Health Service in 1912.) In the late 19th century and early 20th century, public health authorities began mass inoculation programs. This culminated in the spectacular success of polio vaccination in the early 1950s.

The Court's opinion, written by Justice Harlan, analogizes the public health power of the state to the power to defend itself against foreign attack...

Vaccinations were not universally applauded in the early 20th century, however, and one resident of Cambridge, Massachusetts, Henning Jacobson, sued the state public health department after he was fined $5 for refusing to be vaccinated against smallpox, and then jailed when he refused to pay the fine. The case, Jacobson v. Massachusetts, went all the way to the United States Supreme Court. Not only was this the first Supreme Court decision regarding the government's public health powers but it still stands as the leading case acknowledging the scope of these powers.

The Court's opinion, written by Justice Harlan, analogizes the public health power of the state to the power to defend itself against foreign attack, including requiring citizens to take up arms and risk "the chance of being shot down." Harlan emphasizes that the common good takes precedence over the "wishes or convenience of the few." The only constraints on the exercise of this broad public health power are that it may not be either "arbitrary or unreasonable" or "cruel and inhuman." Accordingly, the opinion states that a person can refuse to be vaccinated if doing so "would seriously impair his health, or probably cause his death." In the Court's judgment, Henning Jacobson's objection that he had had an adverse reaction to vaccination as a child did not meet that test. (Note that the grant of an exception to immunization would not mean that a potentially infected individual would be allowed to circulate freely among the population, since the public health authorities could quarantine the person indefinitely.)

The AIDS Crisis
The AIDS epidemic posed some difficult challenges for public health officials. This was not the first time that they had confronted a sexually transmitted disease (STD). In the early 20th century, the STD of concern was syphilis and the government's actions were vigorous. During World War I, for example, 20,000 women believed to be at risk for spreading the disease (hence, the reason they were called "spreaders") were incarcerated in government camps. In the mid-1930s, Surgeon General Thomas Parran developed the techniques of mandatory reporting of infected persons, partner notification and contact tracing that became staples of the public health armamentarium. By the end of World War II, all states required syphilis testing before a couple could obtain a marriage license. Most states repealed these laws in the 1980s but not before many people suffered severe anguish as a result of the 25% false positive rate of the test then in use.

In the early stages of the AIDS epidemic, even more draconian public health measures were proposed. In 1985, the legislatures of Colorado, Florida and Texas considered bills to ban HIV positive individuals from working as food handlers. Rev. Jerry Falwell called for all prostitutes to be placed in quarantine and a bill to that effect was introduced in the Colorado legislature. William F. Buckley called for universal HIV screening. In 1987, Illinois began requiring HIV testing for marriage licenses. (By the end of 1988, 159,000 people had been tested at a cost of $5.6 million. A total of 23 cases were detected.) Also in 1987, then-Vice President George Bush urged the nation to mandate universal HIV screening.

These calls for mandatory action were resisted by AIDS activists and some physicians. Quarantining individuals who engaged in high risk activities was deemed imprudent because it was known that a person could be infected with the HIV virus yet yield a negative test result because of a delay in seroconversion (the ability to detect antibodies to the virus in the blood). Thus, a person who was quarantined would have no way of proving that he or she was uninfected; quarantine, in effect, would have to be for life. The same seroconversion phenomenon bedeviled calls for mandatory testing of patients and prisoners after health care workers, law enforcement personnel or firefighters suffered accidental exposures. This led to an emphasis instead on universal precautions. Furthermore, the stigma attached to AIDS and the discrimination faced by those infected or at risk persuaded health policymakers that, in contrast to the use of mandatory reporting, partner notification and contact tracing that had been employed in the fight against syphilis in the 1930s, more people would obtain HIV testing if the tests were available on a voluntary, anonymous basis.

Yet many in the public health community chafed at anonymous testing, believing that it placed the public at unnecessary risk by tying the hands of public health officials when it came to tracking and preventing the spread of the disease. There were repeated calls to return to the old mandatory public health style of intervention. Gradually, this viewpoint gained support. In 1992, North Carolina public health officials called a halt to anonymous HIV testing, an action that was upheld by the Supreme Court of North Carolina in a case called ACT-UP Triangle v. Commissioner for Health Services. As of now, anonymous testing is banned in Alabama, Idaho, Iowa, Mississippi, Nevada, North Carolina, North Dakota, South Carolina, South Dakota and Tennessee.

What tipped the balance against voluntary, anonymous testing was the development of drug treatment. The FDA approved AZT in 1987, followed by protease inhibitors in 1995. Once these drugs became available, the chilling effect of the stigma or discrimination associated with identifiable reporting of positive HIV test results was deemed to be negated by an individual's desire to be tested so that treatment could commence.

An indication of how far the nation has gone toward a mandatory public health model in its response to AIDS is the September, 2006, recommendation by Centers for Disease Control and Prevention (CDC) that identifiable, reportable HIV tests be made a part of "routine" medical testing. The CDC states that patients should be notified that they were about to be tested for HIV and given an opportunity to decline, but the CDC also states that physicians should not have to obtain specific informed consent for the testing. At the same time, the CDC did not specific what would count as adequate notice. Conceivably, it might be sufficient if HIV testing were merely listed among the series of other tests on a laboratory order form.

Still, the nation seems to have weathered the AIDS epidemic relatively successfully, without seriously weakening the public health system. The question is whether we will be as fortunate in responding to new challenges, especially the challenges posed by our growing knowledge of genetics and by the War on Terror. In order to understand exactly what is at stake, we need to revisit some less successful public health campaigns of the past.

Sickle Cell Screening
After a rapid, accurate genetic test for the sickle cell mutation was developed, a number of states mandated population screening. In some states, the screening was limited to African-Americans, who comprise about 8 to 10% of those who carry the mutation for the disease. In other states, testing was a prerequisite for public schooling. There was inadequate public education about the significance of a positive test result. Many who were merely carriers of the autosomal recessive gene thought that they actually had the disease. People who were homozygous for the mutation did not understand that the severity of the disease varied substantially from one individual to another. Eventually, most of the mandatory screening laws were repealed but not before many people suffered emotional distress and discrimination by insurers and employers.

And in case you thought that winning a Nobel prize for science equips you to make good public health policy, Linus Pauling, who did pioneering work in the late 1940s on the molecular basis for sickle cell disease, not only fully supported the screening laws but, in 1968, urged that every person who was revealed to be a carrier of the sickle cell trait should have an "S" tattooed on their foreheads so that they could avoid reproducing with another carrier.

The U.S. Public Health Service Experiment at Tuskegee
In 1932, the U.S. Public Health Service began a study of 410 African-American syphilitic men in rural Alabama. The purpose of the study was to follow the course of the untreated disease. Subjects were not informed what was wrong with them, and they were not treated, even in the 1950s after penicillin was recognized as standard, effective therapy. In fact, U.S. public health officials actively discouraged treatment by local physicians, the state health department and the army. Subjects were offered a $50 burial subsidy to stay in the study and in 1958 each survivor was given $25 and a certificate of appreciation.

The first paper describing the study appeared in the medical literature in 1936 and reports continued to be published through the 1960s. In 1969, a committee of the CDC reviewed the experiment and authorized it to continue. By the time the press exposed the study in 1972 and it was halted, only 74 men remained alive.

The year 2007 marks the 100th anniversary of the enactment of the first eugenic involuntary sterilization law in history. It may come as a surprise that this law was not passed by the Nazis but by the State of Indiana.

The term "eugenics" was coined in 1883 by Francis Galton, a cousin of Charles Darwin. In 1904, he defined it as "[t]he science which deals with all influences that improve the inborn qualities of a race; also with those that develop them to the utmost advantage." Upon receiving a large gift from the wife of railroad magnate E. H. Harriman, a biology professor named Charles Davenport in 1905 established an organization called the Eugenics Record Office at Cold Spring Harbor, Long Island. (Ironically, this is now a center for genetic research and the home of Dr. James Watson, one of the discoverers of the structure of DNA.) In 1907, as mentioned above, the Indiana legislature authorized the compulsory sterilization of "confirmed criminals, idiots, imbeciles, and rapists" residing in a state institution, provided that a panel of one physician and two surgeons agreed that there was "no probability of improvement" and that it was "inadvisable" for the inmate to procreate.

Eugenics legislation really took off after Davenport hired an Iowa high school teacher by the name of Harry Loughlin to direct the Eugenics Record Office. Loughlin was a tireless advocate of eugenics and, by 1913, 14 states operated active compulsory sterilization programs. Supporters of these programs included many prominent progressives and social reformers. Between 1913 and 1918, a number of the state laws were held unconstitutional on various grounds (including lack of equal protection because they only applied to institutionalized persons; lack of adequate procedural safeguards; and cruel and unusual punishment). In response, Loughlin drafted a new model sterilization law.

One of the states that adopted the new language was Virginia. Under the provisions of the Virginia law, the state sterilized a woman named Carry Buck, who was institutionalized in the Virginia State Colony for Epileptics and Feeble Minded, and she then filed a lawsuit ostensibly to challenge the constitutionality of the statute. As legal historian Paul Lombardo discovered, the suit was a sham. Buck was given virtually no effective legal representation; her lawyer, as well as her supporting witnesses, had gotten together with the state officials to concoct the suit in order to convince the courts to uphold the new model law.

Like the earlier Jacobson case, the case of Buck v. Bell also made it all the way to the U.S. Supreme Court and, in 1927, Oliver Wendell Holmes, one of the most respected jurists in American history, upheld the law with the now infamous words:

We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Jacobson v. Massachusetts, 197 U.S. 11. Three generations of imbeciles are enough.

Decades later, Lombardo's research showed that Buck had been institutionalized when she got pregnant after she had been raped by the nephew of the foster family she had been living with. Neither she, nor her mother or child, were "feeble-minded."

With the constitutional door held open by the Court in Buck, 28 states enacted compulsory sterilization laws by 1931. Georgia passed the last sterilization law in the U.S. in 1937. The number of reported sterilizations in California rose from 322 in 1925 to 2,362 over the course of 1928 and 1929. Nationally, approximately 3,000 operations were reported annually prior to World War II. Many sterilizations that occurred were not reported.

Eugenic sterilization is a form of "negative" eugenics, in that it seeks to prevent the birth of genetically undesirable individuals. The eugenics movement also fostered positive eugenics. During the 1920s, state fairs awarded prizes to "fitter families" and "better babies" alongside champion farm animals. An organization called the Pioneer Fund offered military pilots and crews with three children the equivalent of $45,000 if they fathered a fourth.

The allure of eugenics was apparent to a former German army corporal who read about Loughlin's model law in 1924 while he was in jail writing a book called Mein Kampf. When the Nazis came to power, the first piece of legislation they enacted was a sterilization law modeled on the Virginia statute. (Loughlin was so revered by the Nazis that the Nazi-controlled University of Heidelberg gave him an honorary degree in 1934.) By 1935, over 150,000 people had been sterilized under the German law, including a number of deaf persons who volunteered as a show of support for the Fatherland. Gradually the scope of the law was broadened into a tool of genocide. The Germans also vigorously pursued positive eugenics, as illustrated by the Lebensborn program, in which selected Aryan women were bred with members of the SS and the resulting offspring raised in state-approved foster families.

Although the revelations of Nazi atrocities chilled involuntary sterilization in the U.S. after the war, the practice did not completely disappear. In 1958, 574 operations were performed in Georgia, North Carolina and Virginia. By the time its law was finally repealed in 1974, Virginia had sterilized over 8,000. In April 2007, a woman who was sterilized for eugenic purposes in Indiana in 1972 participated in a ceremony commemorating the victims of that state's program.

Current Public Health Initiatives
Are dark episodes like the eugenics movement a thing of the past? Maybe not. There are many current public initiatives that could be considered eugenic in the sense that they discourage the birth of children in certain populations, such as the poor. According to the Alan Guttmacher Institute, for instance, the government in 2001 spent $1.26 billion on reversible contraceptive services and $95 million on sterilization services, virtually all of which were earmarked for the poor. The welfare programs in 24 states stop increasing benefits once a woman has had more than a certain number of children. In Dandridge v. Williams, the Supreme Court upheld this approach in the face of constitutional challenge. The Court found that the state of Maryland did not violate the Equal Protection Clause of the Fourteenth Amendment because it had a reasonable basis for the program, namely, "the state's legitimate interest in encouraging employment and in avoiding discrimination between welfare families and the families of the working poor." Interestingly, the state itself had articulated an additional goal — "providing incentives for family planning" — which the Court did not mention.

It is one thing for parents to make reproductive decisions in order to prevent the birth of children with disabilities. It is another thing altogether for the government to establish a compulsory genetic screening program...

Some commentators object to calling these programs eugenic because, in contrast to compulsory sterilization or screening, they are in a sense voluntary. A woman does not have to get pregnant or accept welfare. Yet there is one mandatory public health program that is becoming increasingly eugenic: newborn screening. This program began in the 1960s after physician Robert Guthrie developed a screening test for phenylketonuria (PKU), an autosomal recessive metabolic disorder that can be treated effectively if detected soon after birth. Guthrie also pioneered a method for collecting and transporting the blood samples used for screening on special filter paper, known as "Guthrie cards." Massachusetts adopted newborn screening on a voluntary basis in 1962 but after President Kennedy's Advisory Committee on Mental Retardation recommended mandatory screening, states began to enact newborn screening as a legal requirement. By 1973, newborn screening was compulsory in 43 states. Now it is universal.

Pressure from public health officials and groups like the March of Dimes, combined with faster and cheaper technologies such as tandem mass spectrometry and microchip arrays, are causing programs to screen for greater numbers of disorders. The American College of Medical Genetics currently advocates screening for 29 disorders and California now screens for over 70.

Only Maryland, Wyoming and the District of Columbia currently seek parental consent for newborn screening. (Massachusetts recently has begun doing so in a pilot program.) In Maryland, the consent is for the total screening package; parents are not asked to consent to specific tests. Thirty-three states provide an exemption from screening if contrary to parents' religious beliefs but it is up to the parents to assert the objection without being asked.

In 2005, the Nebraska Supreme Court rejected a parental challenge to newborn screening on religious grounds in a case called Douglas County v. Anaya. After a home birth, the Anayas refused to allow a blood sample to be taken and sued the public health department to block enforcement of the law, which contained no exceptions. The court refused to recognize a religious exemption, noting that "[t]he health and safety of the child are of particular concern..."

By focusing on the health and safety of the child, the court makes the case seem no different from the numerous decisions in which the courts refuse to allow parents such as Jehovah's witnesses to withhold treatment from children for religious reasons. But courts override a parental treatment decision for religious reasons only when the denial of treatment would be fatal or would seriously impair the child's health. Routine newborn screening does not have such a direct connection to the child's welfare. The prevalence of PKU in newborns is only about 1 in 16,000. Of the 29 disorders for which the American College of Medical Genetics recommends screening, 12 have a prevalence of less than 1 in 100,000.

Recently, a federal district court upheld the right of a mother to refuse to allow her child to undergo a spinal tap for suspected meningitis. The mother did not assert a religious objection but instead felt that the risks of a spinal tap exceeded the benefit in her daughter's situation. The court held that "[t]he tipping point — the point at which parents lose their substantive due process right to decline medical treatment for their minor child and the State is allowed to exercise its parens patriae interest to compel the child to undergo the treatment — exists when, considering all the circumstances in a particular case, no reasonable parent would decline treatment." Based on this principle, the question for the Anaya court should have been: Would any reasonable parent refuse newborn screening? Only if the answer is "no" would the court be justified in overriding the parents' wishes.

In any event, the Supreme Court of Nebraska did not rest its decision in the Anaya case on the need for screening to protect the newborn's health alone. In addition, the court observed that mandatory screening was necessary in order to address "the potential social burdens created by children who are not identified and treated."

The eugenics implications of this statement are all the more striking in view of the changing nature of newborn screening programs. Originally, states only screened for disorders such as PKU for which effective treatment must begin soon after birth. However, some of the tests being added to screening panels detect disorders that do not have to be treated at such an early age or, in some cases, are not readily treatable at all. Moreover, some public health advocates are now calling for abandoning the connection between newborn screening and treatment altogether. Screening for untreatable disorders, they argue, could spare the family years of uncertainty once symptoms emerge, provide the child with adjunctive if not curative interventions and permit the child to participate in research on the disorder. In addition, however, they point to the value of screening as a tool in family planning. As one recent article explains, "[a]rguments for considering broader benefits from the early diagnosis that only newborn screening can provide include...knowledge on which to base reproductive decision-making years before a disease would be diagnosed for the affected child..." In other words, screening should be expanded so that parents can avoid giving birth to another child with the same disability.

It is one thing for parents to make reproductive decisions in order to prevent the birth of children with disabilities. It is another thing altogether for the government to establish a compulsory genetic screening program to facilitate this objective. This is not to say that public health programs designed to give parents more information about the health status of newborns are a bad idea or that they are on a par with the atrocities of Nazi Germany. But we shouldn't kid ourselves that they are not eugenic practices.

One of the more vigorous efforts now underway to expand the power of public health authorities is being waged as part of the War on Terror. Beginning immediately after 9/11, and spurred on by the subsequent mail-borne anthrax attacks, inspection of our public health infrastructure showed that it was woefully inadequate and incapable of responding effectively to a major bioterrorism incident. This prompted intense efforts to increase public health spending on equipment and training.

In addition, however, some public health zealots believed that the nation's public health laws needed to be revamped to give public health officials adequate power and discretion to take whatever steps might be necessary to combat bioterrorism. They proposed language for a model state law and, with funding from the Robert Wood Johnson Foundation and the W.K. Kellogg Foundation, enlisted the aid of a "who's who" of public health officials and advocates to draft a Model State Public Health Act.

One enduring question is who gets to decide what constitutes the public welfare. Under the Model State Public Health Act, it is the public health authorities and the act places few constraints on their discretion.

An indication of the scope of the powers that would be conferred on public health officials under this law can be seen by considering its provisions for mandatory screening and testing. Under the act, a state or local public health agency may establish a compulsory screening program for any "conditions of public health importance that pose a significant risk or seriously threaten the public's health" (section 5-106(d)(1)). The terms "significant risk" and "seriously threaten" are not defined in the act but the term "condition of public health importance" is defined to mean "a disease, syndrome, symptom, injury, or other threat to health that is identifiable on an individual or community level and can reasonably be expected to lead to adverse health effects in the community" (section 1-102(6)).

Under the model act, could a public health agency therefore make prenatal screening for genetic diseases and conditions mandatory for all pregnant women? The answer is yes, so long as the agency believes that the diseases and conditions, if not detected in utero, pose a significant threat to health that can reasonably be expected to lead to adverse health effects in the community. Is such a belief farfetched? Not necessarily: the American College of Obstetrics and Gynecology recently called for "routine" prenatal screening for Down's syndrome.

Another provision of the model act states that a public health agency may make participation in such a screening program a condition "of participating in or receiving a service or privilege" (section 5-106(d)(2)). Accordingly, women who refused to be screened could be denied health and welfare benefits.

The dark side of public health is most vividly reflected in the eugenics movement, which it championed. It is noteworthy that only three cases involving public health law have reached the U.S. Supreme Court. One, Skinner v. Oklahoma, decided in the middle of World War II, invalidated a state law requiring certain habitual criminals to be sterilized but not others.6 This is the only Supreme Court case in which the justices curbed the public health power of the state. But the Court's opinion left open the possibility that a law that sterilized all habitual criminals would be constitutional. The other two cases were Jacobson, the vaccination case, and the eugenics case, Buck v. Bell, both discussed above.

What is striking about the Buck case is that Justice Holmes's opinion sustaining the constitutionality of Virginia's eugenic sterilization law cited only one previous case as legal precedent: Jacobson. Holmes felt that the broad public health powers upheld in Jacobson extended so far that the state could sterilize people whose genes were deemed defective. Even more striking, the Buck case has never been overruled.

As Justice Holmes made clear in Buck, public health officials may sacrifice the welfare of individuals in order to promote the welfare of the public. One enduring question is who gets to decide what constitutes the public welfare. Under the Model State Public Health Act, it is the public health authorities and the act places few constraints on their discretion. A second question is how far the authorities may go in achieving a public health objective. Under the model act, their power is virtually unlimited.

A recent news story described a patient with drug-resistant TB who, believing himself to have been treated successfully, refused to wear a face mask. Public health officials accordingly quarantined him in a hospital jail cell, where the jailers refused to allow him to have access to a clock radio, television or cellphone. After news reports pointed out that the man was only under quarantine, not arrest, his cellphone was restored and the authorities promised to return his TV.

Public health practices must strike the right balance between individual and community welfare. The TB patient's plight may seem trivial. After all, TB is a scourge and drug-resistant TB is on the increase. But the nation was founded on the principle that the power of the state must be exercised within constitutional limits and overly zealous measures in the past have left an indelible stain on the history of public health.
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