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Sharing Medical Information: Antidote or Bitter Pill?

THE SPECIAL CASE OF HEALTH INFORMATION

The preceding chapters on access and privacy illustrate the complexity inherent in balancing competing societal interests. Transparency in organizations is clearly desirable from an accountability perspective. In government, it ensures the rule of law — that is, that legal principles and regulations are understood and followed. While specific laws could arguably favour a particular group, at the very least the rules are visible and can therefore be debated. In all sectors, organizational transparency thwarts corruption. The ability to get information not only facilitates good governance, but it is also increasingly important from a market perspective: it allows companies to target selected consumers with advertisements for goods and services. At the same time, privacy is an important societal value. Privacy allows a measure of “self-autonomy” — the ability to control what is known about oneself. A related concept, confidentiality, is also important. In the corporate world, “company secrets” — the ability to keep certain information under wraps — allow businesses to compete in the marketplace. Similarly, in government, secrecy is sometimes necessary to national security.

What becomes obvious is the complexity of the application of access and privacy concepts to the management of information and, more generally, to the management of societal interests that balance the rights of the group vis-à-vis the individual. This chapter is the first of three case studies that looks at what happens when the “rubber hits the road” with respect to the application of theory to real-life situations. This first case study discusses the management of health information. The health care sector is one where the benefits of sharing information are readily apparent, but it is also one in which the information is considered to be very sensitive. Two critical facets of medical information management will be examined. The first is the management of health information through the creation of an electronic health record (EHR); this brings the question of the optimal balance between access to information and protection of privacy into stark relief. The benefits to health care providers and their patients of having instant access to information are obvious, as are the risks to privacy that are embedded in systems that store personal information in electronic databases. A second facet of medical information management is the use of data derived from large populations for use by the medical research community to promote health. Using health information for this purpose is secondary to the purpose for which it was collected. As such, careful consideration needs to be given to the balance between the benefits that society will derive from using this information for the purpose of health research and the possible harm that might be done to an individual whose health information is shared. What EHR and health research have in common is that both must concern themselves with confidentiality and the informed consent of those whose information is being shared.

The management of medical information more generally, however, is an excellent example of the challenges associated with balancing the interest of individuals in controlling their personal information with the benefits that may accrue to society when this information is shared. In cases where medical information is used (often by private sector companies) to prevent insurance fraud or to curb substance abuse, transparency and accountability are only loosely related to broader social benefits. Increased access to medical information by those who provide medical services and do research, however, promotes the larger common good by creating efficiencies in health care delivery and in advancing our understanding of diseases and other health issues. While innovations like the EHR provide the paper trail so critical to organizational accountability, the primary goal of the EHR and medical research is to improve the treatment of medical conditions.

ELECTRONIC HEALTH RECORDS

The EHR is most easily understood as the systematic collection and digitization of a patient’s health information so that anyone who treats that patient in a variety of health settings has electronic access to the patient’s medical information. This includes such things as immunization status, laboratory tests, radiology images, and billing information. There are major benefits to information sharing in the medical field. The collection, retention, and sharing of medical information can facilitate the diagnosis and treatment of an illness, it can save the health care system money by eliminating duplicate tests, and it can prevent instances of fraud such as patients seeking multiple prescriptions for narcotics. For example, a college student who visits a campus medical clinic with a sore throat and feeling sick with the flu might be tested for strep throat by a physician who also orders blood tests from another facility. The student is feeling tired, so she goes home to bed, forgoing the blood test. Two days later, her condition has deteriorated and she is taken to the emergency room of a nearby hospital. The attending physician calls up her medical file on a computer, sees that the strep throat test is negative, has the blood work done, and gives her painkillers for her sore throat. Having her medical information on hand provides the physician with her history, including test results with the click of a mouse. This is particularly useful if the patient is too sick to communicate this information effectively. Easily accessible medical information prevents the duplication of the strep throat test and the quick diagnosis of mononucleosis from an analysis of the results of the blood test. In addition, entering the information pertaining to the painkiller the student was prescribed prevents her from leaving that hospital and visiting another medical facility to get a duplicate prescription for the narcotic. Proponents of the type of EHR that facilitated information sharing in this example promote it as a tool that will enhance patient safety as well as increase the efficiency and effectiveness of treatment.

Health information, however, is a very sensitive form of personal information. It can include such items as a patient’s mental health diagnosis; a laboratory test result indicating that a person is a carrier of a sexually transmitted disease; payment information related to a cosmetic medical procedure; or a prescription for pharmaceuticals taken by women in relation to their reproductive health. Genetic information is a particularly sensitive form of health information. It raises unique concerns about privacy and health information because:

• test results may reveal sensitive health information about other family members,
• validation of test results may require information about other family members,
• a small amount of material may reveal a large amount of information,
• genetic information may be used by insurance companies and employers with possible negative consequences for individuals,
• genetic information may reveal “family secrets” such as paternity issues and adoption, and
• genetic testing must respect the right “not to know.”

But even routine health information that is collected or created in the health care sector every day is private and personal. As such, the management of health information is of particular interest to privacy advocates.

As in other areas, privacy rights need to be balanced with other valid objectives. As the authors of a report on health data systems point out, “privacy is not and cannot be an absolute in a democratic society.” They argue that the public disclosure of certain personal information will always be necessary for the “protection of individuals and society” and that competing interests must be balanced. “That the claims to privacy and choice in personal disclosures are especially high and important in the health care field does not mean that they can, or should, always prevail over all competing interests.”¹ For example, consider a university student living in residence who is very depressed and is seeing a school counsellor. University officials, such as the counsellor or a residence official, who have reason to believe that the student is at risk of suicide are allowed by legislation to contact the student’s family members to alert them to their concerns, regardless of the student’s desire for privacy.

Another competing interest with regard to privacy of medical information is public safety. The question of balance between the public’s right to know and the privacy of the patient is particularly vexing in this instance. When does “safety” shade over into “convenience” for law enforcement officials who are investigating a crime? Clearly, emergency hospital staff reporting to police the injuries of a child whom they suspect has been abused by a parent relates to the safety of that child. Similarly, a psychiatrist reporting a mentally ill client’s desire to return to the high school he was suspended from for the purpose of killing staff and students comprises an instance where safety is a vital interest. But what about the police requesting blood samples from the drivers of the vehicles involved in a car accident to determine if either was driving under the influence of alcohol? Should these records be provided to an insurance company to assist in its investigations and determination of liability?

These are just some of the issues that are raised by the digitization and centralization of medical records that provide medical practitioners with easy access to the information essential for their work. But the EHR also contains information that other professionals argue they need for the same reason. Everyone having access to the same information will facilitate the most efficient and effective patient treatment. The trick, of course, is delineating how the claim for the information balances against the need for patient-practitioner confidentiality.

PRIVACY AND CONFIDENTIALITY

The particularly sensitive nature of health information has resulted in the development of policies, codes of practice, laws, and regulations to address privacy and, in particular, the confidentiality and security of such information. The policy rationale behind laws protecting health information is based on its personal nature, the negative consequences that could arise from inappropriate access to it, and the stigma associated with certain health conditions. In addition, the effectiveness of the patient–health care provider relationship depends in large part on the patient’s expectations around the privacy, confidentiality, and security of the information that the patient shares with his health care provider. The Supreme Court of Canada describes personal health information as “information that goes to the personal integrity and autonomy of the patient,” as well as information that is almost always communicated in a context that gives rise to the highest expectation of confidentiality.² Personal health information is imbued with a sense of both a right to privacy and an expectation of confidentiality.

It is clear that society values the fostering, maintenance, and preservation of confidentiality with respect to personal health information. The Hippocratic Oath requires physicians to swear that “whatsoever I shall see or hear in the course of my profession . . . if it be what should not be published abroad, I will never divulge.”³ The basic assumption that information provided to a doctor will not be disclosed to others unless express consent is given is the foundation upon which a trusting relationship is built. If that trust is not there, a patient may decide not to seek health care, or may withhold important information that is critical to the diagnosis and treatment of a medical condition. The basic tenets of the Hippocratic Oath are echoed in a variety of professional standards and laws, such as the Code of Ethics of the Canadian and American Medical Associations, the Ethical Principles of Psychologists of the American Psychological Association, and within subnational bodies like the College of Physicians and Surgeons of Ontario.

The importance of medical information is reflected in the wide range of laws that cover health information access and privacy. Health care workers are required to report to the government agency in charge of motor vehicles any medical conditions that might affect the safe operation of a vehicle by someone applying for a licence; child care providers and teachers are required to report suspected neglect or abuse to social services; and occupational health and safety legislation protects the privacy of injured workers whose employers would like to see their medical files. In addition, many jurisdictions have laws regulating particular health professionals that include provisions for handling health information. In Canada, the provinces of Alberta, Saskatchewan, Manitoba, Ontario, and Newfoundland have passed access to information and protection of privacy legislation specific to health information. Efforts to codify best practices into law reflect the sensitivity of this information and the fact that it touches virtually every aspect of an individual’s life. But these also reflect technological advances wherein increasingly personal information can be gleaned from an individual’s medical records that can be disseminated quickly and easily.

The disclosure of medical records has been a particularly contentious issue in sexual assault cases. If the complainant had been seeing a therapist, lawyers for the defence often have an interest in gaining access to psychiatric records, in hopes of discrediting the complainant’s credibility on the grounds of mental instability or a history of sexual promiscuity. In a leading Supreme Court of Canada case, R. v. O’Connor (1995), the court ruled that such records could be disclosed to a judge if the applicant could make a convincing argument, without actually seeing the documents, that these records were relevant to the case. The judge would then decide whether the complainant’s right to privacy outweighed the importance of the records to the defence. This decision struck down the so-called “rape shield” law, which denied the admissibility of any records that related to the sexual activity of the complainant as evidence. In 1999, however, the courts upheld revisions to the Criminal Code that limited the circumstances under which a complainant’s personal counselling records could be disclosed.⁴ Similar debates have occurred in the United States. The issue here concerns where the line should be drawn between the complainant’s right to privacy and the defendant’s right to access information that might be relevant to the case.

An interesting twist on the right of individuals to expect that their medical records will be kept confidential is a similar right of access to their own medical records. Privacy laws contain provisions that give individuals the right to look at the information about them that an organization holds. They are allowed to correct obvious errors, or in the case of a dispute as to the veracity of the record, they can insert a disputing note. But in some cases, providing an individual access to certain information might be damaging. For example, should a psychologically unstable individual be given access to records that might set off a psychotic episode? Should an individual be told that the person he thinks is his father does not share his DNA?

In previous chapters, it was noted that notions of privacy are both culturally specific and epoch-sensitive. This is especially true with respect to certain medical conditions, particularly those related to sexual activity, such as contraception, abortion, or giving birth to a child out of wedlock. The use of contraception and abortion are not only deeply personal issues, they are illegal in many countries around the world and tightly controlled in others. Both were illegal in North America until the 1960s. Though not a “medical issue” as such, adoption is a consequence of a woman’s decisions regarding her reproductive health and is part of her medical history. It is also a good example of how shifting cultural norms affect the confidentiality of certain medical records.

In years gone by, a woman in North America who bore a child out of wedlock brought great shame to her family. Often she was sent away to give birth to her baby at an un-disclosed location in great secrecy. As such, the idea that eighteen years later the adopted child might find her and expose this family secret was terrifying. Similarly, adoptive parents sometimes refrained from telling the adopted child that they were not his birth parents in an effort to spare the child the humiliation of knowing that he was a “bastard.” While certain non-identifying information might be made available (such as that the father was a diabetic), laws from that era ensured that adoption records were sealed in order to respect the privacy of the various parties.

As the stigma attached to adoption decreased in North America, so too did the necessity for secrecy, and access to records opened up. Given that both parents and adopted children might still prefer anonymity, legislation was passed in various jurisdictions that allowed information to be released and/or contact to be made with the consent of both parties. Passive registries were set up, wherein interested parties can be connected if both join the registry and indicate they would like to make contact with their parents/child. A disclosure veto allows a name to be released to the parent/child if the other party indicates that he wishes to have his name released. Similarly, a contact veto allows a name to be released without consent, but prohibits contact. These measures reflect the generalized change in attitudes toward adoption in North America and the changing norms in handling the medical records associated with it. In other countries attitudes differ dramatically, and so too will the handling of these types of records.

The adoption issue puts into stark relief the conflict between the rights of the individual to privacy and the rights of the parent or child to information. The latter is particularly important to children, whose interest in making contact might be motivated more by questions about genetic or medical histories than a desire to know who their parents are. The issue of adoption records highlights the competing interests with respect to the access to or protection of medical information and also illustrates how attitudes toward the balance between access and privacy vary by epoch and by culture. Attitudes toward out-of-wedlock pregnancy within minority groups in North America may also differ dramatically; however, those groups must conform to legislation that reflects the majority’s will.

At the international level, influential organizations such as the World Medical Association, the World Health Organization, and the Council of Europe have produced documents that highlight the importance of confidentiality of patient information.⁵ These documents also recognize that patients have a corresponding right of access to their health information. Similarly, regarding the United States, Westin and van Gelder conclude:

Now is the time for those involved in current health IT developments to develop a specific mechanism for balancing interests in a new electronic health data network. Achieving balances that a majority of the American public, as well as the health care community, can embrace as the best possible (though never perfect) system will be vital to the future development and operation of any future national electronic network.⁶

While this statement articulates the lofty objectives of using information communication technologies to facilitate the sharing of information to improve health care, the same types of concerns have been raised in the health community with respect to the health profiling of particular groups. Data matching provides an abundance of information about a patient that could lead to particular assumptions being made that could affect a diagnosis or the prescribing of a drug. Thus it might be assumed that an Irish Catholic is an alcoholic; a gay man engages in casual unprotected sex; an Aboriginal person has a poor diet; a Chinese person uses opium; or an elderly married woman is unlikely to be HIV-positive. This phenomenon is similar to that of racial profiling, which is discussed in more depth in the next chapter.⁷ The possibility that extraneous information could inadvertently prejudice diagnosis must be considered in any discussion of the development of systems to manage health information.

There have been numerous complaints to privacy protection oversight bodies concerning employers collecting more medical data than they needed for a particular purpose (e.g., a doctor’s note saying that a person had a medical condition that prevented him from working for five days is sufficient; a diagnosis of the medical condition is not required). Some employers have instituted drug testing for employees; these tests provide employers with medical information that indicates the presence of particular substances in blood or urine. The Canadian Human Rights Commission has ruled that this is acceptable if the employer can demonstrate that there is a bona fide occupational requirement.⁸ That is, it is acceptable if the employer can demonstrate that the worker is in a safety-sensitive position, or if there are reasonable grounds to suspect the existence of an underlying problem that is impairing an employee’s ability to meet the requirements of the job or is the cause of an accident, or if an employee has disclosed a current or previous drug or alcohol dependency issue. These criteria were applied to a complaint brought before a privacy ombudsman involving a school division that wished to compel student athletes to undergo random drug testing as a condition of participation. In this case, the ombudsman ruled that students had the same rights to privacy as adults. As the school could not demonstrate that any of these criteria applied, the policy was abandoned.⁹ In this case the privacy rights of the students (as with the workers) were deemed to be more important than the risk to society if drug or alcohol use went undetected.

Another important area of concern with respect to medical information is genetic discrimination, which occurs when a person or group of people is disadvantaged by virtue of genetic makeup. A life insurance company might use genetic information to determine an applicant’s likelihood of dying prematurely because of an inherited predisposition to an illness. Employers might use genetic profiling to determine a candidate’s suitability for a particular kind of work. What is at issue here is that these determinations are based on evidence that is often contestable and sometimes purely speculative. In 2001, the U.S. Equal Employment Opportunity Commission sued the Burlington Santa Fe Railroad on behalf of railroad employees for administering blood tests that were used in an attempt to determine the employees’ genetic susceptibility to carpal tunnel syndrome. These tests were illegal and their purpose was hidden from employees. In a blatant attempt to avoid compensating those who suffered from this syndrome, the tests were undertaken in the hope that a genetic predisposition to the disability would be determined, as opposed to addressing the repetitive and stressful conditions that the railway’s critics claimed was the real cause of the disability. As one critic of genetic profiling observes: “These aspects of genetic surveillance, privacy, and discrimination are certain to persist as insurance companies and employers continue to press for legal access to genetic information.”¹⁰ The predictive aspects of genetic information have clear benefits, but they have the potential to create new forms of discrimination as well.

Although medical information is a particularly sensitive form of personal information, most individuals are prepared to share it with the appropriate health care personnel. It is shared with the expectation that it be kept in confidence. It is when an individual’s medical information is shared for purposes other than medical treatment that sharing becomes contentious.

SECONDARY USES OF MEDICAL INFORMATION

The use of information by an organization for a purpose other than that for which it was collected is referred to as “secondary use.” Typically, it is not practical for secondary users to collect information themselves; they rely on primary health care providers to collect and share this information. Often the person whose information is being shared is unaware that there is a secondary use of her data. Access and privacy legislation specific to the health care sector was developed in part because of the multitudes of legitimate secondary uses of health information. By law, in instances where consent is required, it must be “informed” consent. Those who are asked to provide data for a particular purpose must have a clear understanding of why the data are needed and also what the implications are of giving their consent. Clearly, if express consent to share is not deemed to be required, the conditions in which that sharing can happen must be limited and clearly delineated.

The secondary use of medical information is a major issue for the health care community and for privacy advocates. A variety of people may have an interest in health information, even though they did not collect it. For some, this information relates to their core activities — as in the case of health insurers and medical researchers. Others, such as an employer or a school, might also require medical information. An employer might need to accommodate absences from work owing to illness or make allowances for a worker’s inability to perform certain tasks because of a medical condition. Similarly, a student might have a medical condition that impedes his or her ability to learn or to participate in physical education classes, or that requires absences from school, or that might necessitate emergency care. This information can be collected directly from the worker or the student, but, in certain circumstances, employers and schools have the ability to obtain it directly from the health care provider without consent. As always, the right to privacy must be weighed against the importance of this information to others.

Health Research: Consent and the Public Interest

One of the most important secondary uses of medical information is research. Health-related research takes a variety of different forms, including the impact on health of such diverse things as the environment, lifestyle choices, hereditary factors, education, and consumption patterns. Governments typically promote health research; great savings can be realized in terms of reduced pressures on health care and social service systems, as well as reduced economic losses due to illness-based absences from work. Research gives public sector bodies insights as to where money is best spent within the health care, education, and labour systems in order to effect the largest benefit in improving the health of a particular population. Governments can provide support by funding research, but they can also support research by providing access to information for the purposes of conducting research.

Given the societal benefits that can be realized by research based on large populations, it is generally accepted that the consent typically required for the secondary use of personal information can be overridden by the public interest. Obtaining the consent of each individual contained in a particular database would be extremely burdensome for the researcher, or impossible if the person has died or has moved. Moreover, using only data from those who give consent will skew the study because all of the participants are self-selected. Researchers hasten to point out that the insights derived from the research not only benefit society, but will also benefit individuals either directly in terms of their own health or indirectly as members of a society that will use funds more efficiently. While this section focuses on health research, similar arguments are made in other disciplines.

Large quantities of information about a particular person can be gleaned by combining various data sets collected by various professionals — the school nurse, the chiropractor, the ambulance attendant, or the physician, for example. This information can be very useful in research that strives to identify causes of medical conditions or determine the best treatments. It is also very useful to drug companies for marketing their products. The use of secondary data greatly reduces the costs to the user because the data have already been collected. While the purpose might be noble in the case of medical studies, few people are comfortable with teams of researchers poring over their comprehensive medical histories and then possibly publishing information that could be linked to them. Typically, health information can be used for research once it has been stripped of identifiers that link it to a particular person.

The problem arises when researchers want to gather information about individuals from multiple sources in order to create a comprehensive picture of the subjects of their research that can be used to link health determinants to health status. Linked data are also useful for conducting cohort studies that follow particular individuals over time, as their information will need to be updated during the course of the study. In addition, these data are also useful in studying the spillover consequences of policies. So, for example, a policy that would reduce expenditures in one area may have the unintended consequence of increasing expenditures in another area. Linked information from medical and non-medical databases can be extremely useful in determining these relationships. What is needed, however, is a common identifier that can link the data: this element is typically is a health insurance number or name. These common elements, unfortunately, also match the data to an identifiable individual. Any researcher who wants to use data for a secondary purpose and who wishes to use matched data must provide compelling reasons to oversight bodies for doing so. Understandably, it is far easier to gain access to data that have been stripped of identifiers than it is to gain access to linked data. The latter is frequently approved for some health researchers as well as for researchers in other fields, such as historians seeking access to census data.

The confidentiality of research subjects is governed not only by legislation but also by research ethics boards and the bodies that provide research funding. In Canada, the Tri-Council (the Medical Research Council of Canada, the Natural Sciences and Engineering Research Council of Canada, and the Social Sciences and Humanities Research Council of Canada) provide oversight through directives to those researchers undertaking studies that involve human subjects. Researchers must assess privacy risks and threats to the security of collected information and follow approved procedures to protect and dispose of data. Universities that receive funding from the Tri-Council must adhere to the policies and procedures it sets out; otherwise funding will be terminated. As such, university researchers conducting any research (even those that are not Tri-Council funded) must have their studies involving human subjects approved by their university’s research ethics board before beginning the study. As will be demonstrated in the next section, however, these oversight mechanisms are a recent phenomenon.

Health Research: Classification, Profiling, and Discrimination

Health research has long attempted to classify certain populations by genetics determined in part by race. Advances in genetic sciences and the advent of computer modelling support these classification efforts and promote the curative potential of disease-related genetic research. This has led to the claim that the future of medical research lies in the discipline of genetic epidemiology — the study of the causes of inherited disease in populations.¹¹ While these claims are welcome news to those suffering from an illness and waiting for a genetic cure, there are many who are much less optimistic.

To begin with, racial classifications are contested, as the notion of race itself is a contested concept. Both anthropologists and sociologists have long held that race and ethnicity are cultural and sociological constructs, and many biologists and geneticists are now coming to similar conclusions. In June 2000, when two distinguished scientitsts, Francis Collins, of the National Human Genome Research Institute, and Craig Venter, of Celera Genomics, unveiled a draft sequence of the human genome in a Rose Garden ceremony at the White House, Venter stated emphatically that “race has no genetic or scientific basis.”¹² From this perspective, there are more genetic differences among members of a given ethnic group than there are among the groups themselves.¹² Medical research that focuses on genetic makeup tends to ignore the socio-economic, cultural, and environmental determinants of disease. Not only does a focus on genetics funnel thought in a particular direction, but it also fuels fear of the construction of racist and discriminatory categories that are grounded in faulty biological assumptions.

These fears are rooted in racist and discriminatory medical practices and in the crimes that have been committed in the name of medical research. In the nineteenth century, the supposedly scientifically based doctrine of “racial hygiene” was prominent in Europe and in North America. This doctrine was based on a crude misconstruction of Darwin’s theory of evolution, claiming that some human lives were superior to others and that only the fittest would survive. Those who were poor demonstrated their lack of fitness through their failure to thrive economically. This thinking was applied to entire populations of people, resulting in hierarchies of human groups wherein particular groups were deemed to be racially inferior. This conception of the inferiority of groups was the justification for such practices as segregation in the United States, apartheid in South Africa, the “final solution” to the “Jewish problem” in Germany, and the “ethnic cleansing” of the Tutsis by the Hutus in Rwanda.

In the medical field, the notion of racial hygiene led to the emergence of eugenics, the “science” of improving a race by controlling the reproductive capacity of those deemed to be genetically inferior through forced sterilization. In the US, vasectomies were forced upon the criminally insane. The Canadian provinces of Alberta and British Columbia passed sterilization acts in the 1920s for the purposes of preventing mental “defectives” from reproducing. Until the abolition of these acts fifty years later, almost three thousand Albertans and four hundred British Columbians were sterilized. For most, this occurred without their consent and for reasons that were not based on genetics but rather on social class, ethnicity, and gender.¹³

It was Nazi Germany, however, that took the concept of eugenics to unprecedented levels. Eugenics provided the rationale for euthanasia, the “mercy killing” of those who were deemed unfit to live. The concept of Deutsche Volksgemeinschaft, or the community of the German people, obliterated personal autonomy and with it the ethical dimension of medicine. Those who were handicapped, deformed, mentally ill, afflicted with chronic illness, alcoholic, or regarded as genetically inferior on the basis of race or sexual orientation were considered candidates for death in order to provide for the collective health of the national community. Eugenically based justifications for extermination of the Jews have been attributed to professional opportunism: during the economic depression that preceded the rise of the Nazis, jobs within the medical profession were relatively scarce. Many Jews were doctors, and eliminating them as competitors for positions opened up opportunities for non-Jewish doctors.¹⁴ Those German physicians who opposed Nazi ideology were forced to emigrate or were killed. It would be another fifty years before the German medical profession engaged in an intense process of self-reflection regarding its role in Nazi atrocities. This medical fraternity saw itself as elite but fundamentally altruistic, as opposed to secretive and misguided. Contemplation of its past history brought to the fore the relationship between transparency and ethics.¹⁵

The general acceptance of eugenics in the last century highlights the danger of using scientific justifications for discriminatory practices and explains the unease of minority groups with respect to large-scale research projects that use medical information for the secondary purpose of determining patterns of diseases. This case also demonstrates the necessity of developing moral and ethical codes for those conducting medical research. First and foremost in these codes is the notion of informed consent; this consent underpins personal autonomy and self-determination. Consent has its legal basis in a 1914 case in the United States, Schoendorff v. The Society of the New York Hospital,¹⁶ in which the judge proclaimed that a surgery performed without consent constitutes an assault for which the surgeon is liable. But decades later, prisoners in Nazi concentration camps were subjected to all manner of experimental medical procedures in the name of research. The horrible deaths, disfigurement, and disabilities that the prisoners suffered as a result of these abuses led to the establishment of the Nuremberg Code, which outlined ethical principles guiding the use of humans in experiments.

It would be almost two decades later before the principle of informed consent would take hold, however. The impetus in the US came as a result of an article published in 1966 in the New England Journal of Medicine that outlined twenty-two cases of unethical research in that country.¹⁷ These included the deliberate infection of residents with hepatitis at the Willowbrook State School for “mentally defective” children without providing adequate information to their guardians in the 1950s, and the injection of live cancer cells into patients at the Jewish Chronic Disease Hospital in the 1960s without their knowledge (and hence without consent). But it was a forty-year study conducted by the US Public Health Department of the consequences of syphilis for African-American men that provoked a wholesale rejection of previous practices in experiments involving human beings. The Tuskegee study began in 1932 to study the natural course of the disease in hundreds of impoverished Alabama sharecroppers. Shortly thereafter penicillin became the standard for treating syphilis, but subjects were not provided with this information and were prevented from accessing treatment that was available. The premise of the study was that syphilis had different outcomes for whites and blacks, and while this race-based hypothesis was debated, the fact that humans with a potentially fatal disease were not treated with a known and effective treatment did not raise ethical concerns. In addition to the obvious issues relating to having a life-threatening disease that was not treated, many partners of the research subjects were infected and their children were born with congenital syphilis. The project finally ended in 1972, after a long-time critic went to an Associated Press reporter with the story. A few years later the US government agreed to an out-of-court settlement with the subjects and their survivors.¹⁸

The lasting legacy of the Tuskegee study is American minorities’ mistrust of public health projects and the proliferation of conspiracy theories, including that of AIDS being a form of genocide created by whites to eliminate blacks.¹⁹ There are many other examples wherein particular groups in society were exposed to risks in the name of research. These serve as cautionary notes to those who claim that the risk that research poses to individuals pales in the face of the broader human benefits that research produces. Clearly, those who bear the burden of the research may have a different perspective than those who benefit from it. Ultimately, those who conduct medical research must keep ethical considerations at the forefront of the inquiry, focusing on individual autonomy and informed consent as key values. While the societal benefits of data collected from a large-sample population are huge, these benefits must be carefully considered against the possible harm to an individual within that population.

The fine balance between individual rights and societal rights in public health is particularly evident in countries like Canada. Using the Ottawa Charter for Health Promotions produced by the World Health Organization in 1986 as a foundation, Canada began to move away from the individualistic understanding of the impact of lifestyle choices as a key determinant of health toward one that highlighted the social context in which the individual lives. This emphasis shifts the focus of health to capacity building from the previous emphasis on disease prevention. As such, capacity building recognizes that many determinants of health reside outside the health sector. Public health officials not only have an obligation to ensure the well-being of others; they also have policing power to compel individuals with health issues to do particular things in order to ensure security of the collectivity. Because the emphasis is on improving the health of populations, public health officials continually face ethical conundrums with respect to balancing individual liberties with the rights of the groups.

While sharing information for the purpose of medical research, health promotion, and containment of disease is clearly beneficial for society, history has taught us that these goals can be displaced by those that are far less benign, such as genetic discrimination based on faulty science. The balancing act that state authorities must perform is further complicated by an increasingly globalized world where diseases are not contained within national boundaries. As such, states must work with other states to determine what information must be shared and what must be protected. Global threats to health may in fact be the most significant transboundary issue that contributes to the growth of global governance.

MANAGING HEALTH INFORMATION

Of all the information that is collected from individuals, medical information is considered by many to be the most sensitive. This information not only provides clues to our genetic makeup but also gives insights into our physical vulnerabilities and lifestyle choices that impact our health. This same information is extremely useful to researchers in determining the causes of disease and other threats to health. The balance between the autonomy of the individual and, in particular, an individual’s right to privacy must be weighed against the good derived from society through the sharing of this information.

It was argued earlier that the balance struck between access and privacy is both culturally specific and epoch-sensitive. Nowhere is this more obvious than in the management of health information. Actions that the Western world now considers travesties of justice with respect to the right to autonomy of particular populations were thought, less than half a century ago, to be based on scientifically informed assumptions. Ideas regarding the inherent inferiority of certain groups of people are still used in an effort to justify discrimination.²⁰ It is for this reason that the ethical use of medical information has become its own sector of academic inquiry. Similarly, the advent of new technologies that allow the dissemination of information quickly and easily has raised many questions about the electronic management of health information. Yet these new technologies that provide easy access to information provide huge efficiencies both in terms of financial costs and patient treatment. For the custodians of medical information, these are relatively new questions for which there are no easy answers. The ways in which technology can benefit society appear at times to be limitless, but so too do the threats. The next chapter examines new technological innovations in surveillance that, like the electronic health record, provide certain advantages but also have a darker side.