PRIVACY IN HEALTHCARE

Privacy is a rich concept with a major role in the assessment of healthcare practices, policies, and law. It has become increasingly commonplace to ascribe important health-related privacy interests to individuals, families, and institutions and then to criticize public and private sector failures to protect those interests.

Privacy and Health Services

The word privacy has four major usages, corresponding to four distinct forms, dimensions, or conceptions of privacy: physical privacy, informational privacy, proprietary privacy, and decisional privacy. Issues relating to all four pervade healthcare.

PHYSICAL PRIVACY. Under one popular usage of the term, privacy denotes freedom from contact with other people. The desire for limited physical accessibility—for seclusion and solitude conducive to peace of mind and intimacy—is a desire for privacy in this first sense. Members of the general public regard many social, business, and governmental contacts as privacy intrusions. These include door-to-door, street corner, telephone, and mail solicitation; some forms of sexual harassment; beeper and cellular telephone monitoring; and employers' performance, polygraph, drug, and alcohol testing. Common governmental practices are controversial for their threats to physical privacy, especially the use in foreign intelligence gathering and domestic surveillance of high-powered binoculars, concealed tape recorders, cameras, wiretaps, and thermal imaging. The loss of physical privacy is sometimes a concern when criminal-justice officials rely on body-cavity searches, prison-cell searches, and electronic monitoring of probationers; or when the police operate "checkpoints" to detect violations of curfew, seat-belt, drug, and drunk-driving laws.

Complete physical privacy is inconsistent with the demands of modern healthcare. The modern delivery of health services presupposes that patients and medical professionals mutually accept nudity, touching, and observation as unavoidable aspects of examination, treatment, surgery, and hospitalization. Typical patients willingly sacrifice the desire for bodily concealment and seclusion for a chance at better health. Yet patients often expect their physicians, nurses, and other caretakers to guard assiduously against unnecessary bodily exposure or contact. The examination gowns and pajamas worn by patients respond to the expectation of privacy, as well as the need for warmth.

Hospital patients—and their lawyers—have sometimes characterized unauthorized medical treatments as invasions of privacy, along with the bedside presence of inessential medical attendants, spectators, or cameras. The desire for physical privacy may lead patients who have a choice to select single over shared hospital rooms. Because for many Americans bodily exposure to persons of the opposite sex is a more significant loss of privacy than same-sex exposures, the desire for physical privacy has led some patients to prefer physicians or nurses of their own sex. Norms of quietude surrounding hospitals reflect the sentiment that patients have heightened physical and psychological needs for solitude and peace of mind.

INFORMATIONAL PRIVACY. Under a second popular usage, privacy is synonymous with secrecy, confidentiality, data protection, or anonymity. It requires limits on the accessibility of personal information. The expectations of privacy surrounding health information are especially high, but not unique. Significant expectations of privacy exist also for information related to employment, education, Social Security numbers, criminal arrest, library use, video rentals, motor vehicle registration, taxes, consumer credit, and banking.

Informational privacy concerns in the healthcare setting have traditionally focused on the confidentiality of the physician–patient relationship and on limiting access to medical and insurance records. The willingness of patients to speak openly about physical and mental health concerns depends, in part, on expectations of professional confidentiality. The administrative demands of managed care interject faceless decision makers into the context of physician care at a cost to privacy. Proposals for governmentally or institutionally mandated testing, reporting, and identification raise other informational privacy concerns. The public health community recognizes the potential threat to privacy and other important interests posed by nonanonymous AIDS testing or reporting and mandatory medical insurance identification cards.

Informational privacy in healthcare is not solely a matter of safeguarding information about individuals. By virtue of genetic ties, family members may share health conditions or predispositions. Progress by researchers toward the goal of mapping and sequencing the human genome has heightened ethical concerns about possible family, as opposed to individual, privacy interests in the information coded in a person's genetic materials (Powers).

Informational privacy requires appropriate forms of secrecy, sometimes defined as intentional concealment of fact (Bok); and confidentiality, defined as selective disclosure of fact to authorized persons (Allen, 1988). In institutional settings security requires mechanisms capable of limiting access to information, such as locked office doors and file cabinets. The security of health data shared on computers may require user identification passwords and encoding. In addition to security, concern about privacy of information overlaps with concern about what are sometimes called "fair information" practices. These include maintaining accurate information in confidence. The accuracy and security of information contained in health, insurance, adoption, and gene-research records potentially bears on the quality of healthcare and therefore holds special importance.

Managed care, the AIDS epidemic, and the Human Genome Project spawned numerous proposals for federal and state regulations governing health information. The federal government responded with the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA included provisions encouraging uniform electronic transfer of medical information and required modern safeguards to protect both the security and confidentiality of medical data. HIPPA's initial privacy standards went into effect in April 2001 and did not preempt stronger state law privacy standards.

HIPAA covers government and private health plans, healthcare clearinghouses, and many healthcare-related service providers, such as firms that take care of patient billing. These firms must adopt privacy policies and inform patients of their privacy rights. They must also train staff to respect privacy and designate a privacy officer charged with privacy oversight responsibilities.

HIPAA requires special protections for individually identifiable health information disclosed orally, on paper, or electronically. Patients must be given notice of their privacy rights, access to their medical records, and a right to limit disclosures to third parties, subject to certain exceptions. For example, patients do not have the right under HIPAA to veto access to their medical records by public health officials, researchers, the courts, or emergency medical personnel or in certain other situations. Only psychotherapy notes used and created by psychotherapists are accorded a higher level of protection. Patients do have rights against the unauthorized disclosure of their medical information to third parties for employment personnel or marketing purposes. Although HIPAA does not authorize patients to sue for violations, it places enforcement powers in the hands of the Department of Health and Human Services, which may seek civil penalties and criminal punishments up to $250,000 and ten years in prison for the most egregious knowing violations of the statute.

PROPRIETARY PRIVACY. Concerns relating to the appropriation and ownership of human personality are increasingly framed as privacy concerns. Under a third usage, privacy can mean the appropriation of a repository of personal identity. These concerns have emerged in healthcare and health-research-related domains. According to American common law now recognized in a majority of states, to appropriate a person's name, likeness, or identity is a way of invading that person's privacy. Following this precedent, patients photographed without their consent may object to publication on privacy grounds. Moreover, because a person's genes are widely believed to be biologic keys to personal identity and sources of health information that should be properly controlled by the individual, a person whose DNA is appropriated without consent may likewise object on privacy grounds. In the 1990s, when the U.S. military first required active duty service members to undergo tissue sampling for possible future DNA testing in the 1990s, service members raised privacy objections that led the Department of Defense to strengthen safeguards against breaches of its DNA data banking system. After the Burlington Northern Santa Fe Railroad conducted secret DNA testing on employees to determine genetic predisposition to carpal tunnel syndrome, the company entered into a settlement with the Equal Employment Opportunity Commission in May 2002, agreeing to pay $2.2 million to affected workers.

DECISIONAL PRIVACY. Individuals, families, and domestic partners typically define some decisions as personal decisions and certain conduct as intimate conduct. Under its fourth usage, privacy denotes autonomous choices about the personal and intimate matters that constitute private lives. Decisional privacy signifies the ability to make one's own decisions and to act on those decisions, free from governmental or other unwanted interference. Decisional privacy concerns in the health context relate to responsibility for important decisions about treatment, the termination of treatment, and the allocation of scarce medical resources. Legal and ethical disagreements about who has the "right to decide" or the "right to choose" sometimes have turned collaborating patients, physicians, nurses, hospitals, families, researchers, and lawmakers into competitors and litigants.

In the United States, conceptions of decisional privacy have come to dominate discussions of government regulation of abortion and the treatment of patients who are severely disabled, terminally ill, or in a persistent vegetative state. In the context of so-called surrogate motherhood, privacy for infertile couples has meant the freedom to make legally enforceable agreements to procreate with the assistance of third parties. Gay men and lesbians invoke the ideal of privacy in their quest for the freedom to engage in consensual adult sexual relationships and marriage, free from the fear of criminal prosecution and legally sanctioned discrimination. Parents sometimes invoke "family privacy" to mean the freedom of heads of households to decide how those for whom they are responsible will be reared, educated, and medically assisted. Invocations to respect privacy accompany defenses of limited government and autonomous decision making respecting heterosexual sex, contraception, midwifery, women's prenatal conduct, use of experimental medical remedies, psychotropic drug therapy, organ sales and transplants, hunger striking, prostitution, and pornography.

Theories about Privacy

Theorists from disciplines that include philosophy, bioethics, and law have offered accounts of the meaning and value of privacy. Some of these accounts, though by no means all of them, have been prompted by a desire to clarify the assumptions and aims of health-related law and public policy.

DEFINITIONS OF PRIVACY. Contemporary theorists actively debate how precisely to define, value, and protect privacy (Cohen; Schoeman, 1992; Inness; Wacks; Allen, 1988). Although many acknowledge that privacy is used in distinguishable physical, informational, proprietary, and decisional senses, no single definition of privacy in any of its senses has gained universal acceptance. Nor has any theory of the value of privacy gained universal acceptance.

Scholars disagree about how to approach defining privacy (Allen, 1988). Some say privacy should be defined as a value or moral claim (Inness), others as a fact or a legal right (Gavison). Some say that definitions of privacy should prescribe ideal uses of the term (Gavison), others that definitions should describe actual usage (Allen, 1988). Debates over the definition of privacy may seem arcane. Yet the outcome of the debates bears importantly on the framing of ethical and legal issues raised by healthcare. For example, some theorists contend that the popular privacy arguments for abortion rights are unsound because they confuse privacy with liberty, autonomy, or freedom.

Proposed definitions of privacy range from the very expansive "being let alone," popularized by Louis Brandeis and Samuel Warren in an 1890 Harvard Law Review article, to Alan F. Westin's more specific "claim of individuals, groups or institutions to determine for themselves when, how, and to what extent information about them is communicated to others" (p. 7). Many definitions characterize privacy in its physical and informational senses as denoting conditions of restricted access to persons, their mental states, or information about them (Allen, 1988). According to Ruth Gavison, "[i]n perfect privacy no one has information about X, no one pays attention to X, and no one has physical access to X" (p. 428). So conceived, privacy functions as an umbrella concept, encompassing a family of concepts each of which denotes a form of limited access to others. There is disagreement about the composition of the privacy family's membership list. The list, however, arguably includes seclusion, solitude, anonymity, confidentiality, modesty, intimacy, reserve, and secrecy.

The debate over the relationship between the concepts of privacy and secrecy exemplifies the bewildering extent of disagreement about how to define privacy and related concepts. Although some scholars view secrecy as a form of privacy, others view privacy as a form of secrecy (Friedrich). Still others view them as distinct concepts. In a 1984 book titled Secrets, Sissela Bok argued that privacy and secrecy are wholly distinct concepts—the former referring to limited physical and information access, the latter to intentional concealment of information.

A number of definitions of privacy instead emphasize control, whether control over information or control over avenues of observation and physical contact (Fried; Westin). In the media-saturated and bureaucracy-dependent society of the United States, it is perhaps unsurprising that one scholar has suggested that privacy involves the possession of undocumented information (Parent, 1983a, 1983b). Other legal and moral theorists stress privacy as a social practice with normative functions (Inness). Jeffrey H. Reiman links privacy to the formation of individuality and personhood: "Privacy is a social ritual by means of which an individual's moral title to his own existence is conferred" (p. 39).

THE DECISIONAL PRIVACY CONTROVERSY. Perhaps the greatest source of definitional disagreement surrounding the concept of privacy has related to the decisional usage of privacy. Decisional privacy has been defined as control over intimate aspects of personal identity. In the United States, aspects of the human body, sex, reproduction, marriage, and family are generally considered as numbering among the intimacies of personal identity. The U.S. Supreme Court popularized the decisional usage of privacy in the 1960s, 1970s, and 1980s by characterizing laws restricting birth control, abortion, end-of-life medical decision making, marriage, and parental authority as burdening the right to privacy. Decisional privacy rights in the law presuppose a private sphere of conduct immune from state or federal regulation. Some scholars emphasize the ideal of privacy as the ideal of limited government (Rubenfeld).

Many theorists insist that privacy in the decisional sense is not properly understood as a sense of privacy at all (Gavison; Parent, 1983; McCloskey; Ely). They raise several arguments. First, they argue, as an aspect of liberty, freedom, or autonomy, decisional privacy stands apart from paradigmatic forms of privacy, such as seclusion, solitude, and anonymity. Second, if one speaks of "decisional" privacy, one loses the ability to treat privacy and liberty as distinct concepts. Confused, ambiguous uses of the concept of privacy in the U.S. Supreme Court's first contraception and abortion cases helped to raise this widespread objection.

Defenders of the decisional usage of the term privacy counter that decisional privacy is worthy of the name (DeCew, 1987). They emphasize that although decisional privacy denotes aspects of liberty, freedom, and autonomy, it denotes aspects of these that pertain to deeply felt conceptions of a private life beyond legitimate social involvement. Controversial or not, using "privacy" to denote a domain outside of legitimate social concern has become an entrenched practice in the United States.

THE PUBLIC AND THE PRIVATE IN POLITICAL THOUGHT. Linkage with the Greco-Roman heritage of Western law and political theory may provide a degree of historic and etymological validity to the controversial practice of referring to freedom from interference with personal life as "privacy." The decisional usage of privacy has origins in classical antiquity's distinction between private and public spheres.

The Greeks distinguished the "public" sphere of the polis, or city-state, from the "private" sphere of the oikos, or household. The Romans similarly distinguished res publicae, concerns of the community, from res privatae, concerns of individuals and families. The ancients celebrated the public sphere as the sphere of political freedom for citizens. The public realm was the sector in which select men—free men with property whose economic virtue had earned them citizenship and the right to participate in collective governance—could truly flourish. By contrast, the private realm was the sector of mundane economic and biologic necessity. Wives, children, and slaves populated the private economic sphere, living as subordinates and ancillaries to autonomous male caretakers.

The post-Enlightenment Western liberal tradition inherited the premise that social life ought to be organized into public and private spheres (Arendt; Habermas). It also inherited the premise that the private sphere is properly constituted by the home, the family, and intimate association. Nevertheless, whereas ancient thought tolerated the private and celebrated the public, modern liberal thought often reflects an opposing tendency: It tolerates the public as pervasive and necessary for collective welfare but celebrates the private as an essential expression of personal identity, freedom, and responsibility.

The political concept of a limited, tolerant government—elaborated by the English philosopher John Locke (1632–1704) and Thomas Jefferson as a requirement of natural rights, and by the nineteenth-century English philosopher and economist John Stuart Mill and the eighteenth-century Scottish economist Adam Smith as a requirement of utility—entails a nongovernmental, private sphere of autonomous individuals, families, and voluntary associations. Mill emphasized the importance of government tolerance, arguing that government is not well situated to assess the utility of "self-regarding" acts that potentially harm only the actors themselves. Self-regarding conduct "neither violates any specific duty to the public, nor occasions any perceptible hurt to any assignable individual except himself" (Mill, p. 80). It is, in other words, conduct that is restricted to an individual's own body and property and that may offend others but imposes no risk of significant harm on others. The contractarian political tradition of American democratic liberalism requires tolerance for religious minorities, political dissenters, and unpopular lifestyles. The ideal of tolerance is arguably the ultimate foundation of the case for sexual privacy for homosexuals and women seeking abortions (Richards).

The ideal of a private sphere free of government and other outside interference has currency, despite the reality that in the United States and other Western democracies, virtually every aspect of nominally private life is a focus of direct or indirect government regulation (Cohen). Marriage is considered a private relationship, yet governments require licenses and medical tests, impose age limits, and prohibit polygamous, incestuous, and same-sex marriages. Procreation and child rearing are considered private, but government child-abuse and neglect laws regulate, if at times inadequately, how parents, and possibly even pregnant women, must exercise their responsibilities. The ideal of a private sphere can be no more than an ideal of the ability of ordinary citizens to make choices that are relatively free of the most direct forms of governmental interference and constraint.

The worthiness of this ideal has been called into question in the United States, where problems of domestic and other private sector violence suggest a need for more rather than less involvement in the traditionally "private" spheres (Allen, 2003; Morris; MacKinnon). In addition, the ideal of a private sphere has been the ideal of a sphere of negative as opposed to positive freedom. The right to privacy in the context of contraception and abortion has meant a negative right against government decision making respecting procreation, not a positive right to governmental programs designed to make contraception and abortion services available to those who cannot afford to pay. Critics blame the emphasis on privacy and negative freedom for the failure of legal efforts to secure government funding of abortions for women who are poor.

ETHICAL VALUES. Physical and informational privacy practices serve to limit observation and disclosure deemed inimical to well-being. Psychologists have long emphasized the unhealthful effects of depriving individuals of opportunities for socially defined modes of privacy (Schneider). Many philosophers maintain that respecting physical, informational, and decisional privacy is paramount for respect for human dignity and personhood, moral autonomy, and workable community life (Schoeman, 1992; Allen, 1988; Kupfer; DeCew, 1986; Feinberg; Benn). Lawyers view the moral value of privacy as the basis of moral rights deserving legal protection (Greenawalt; Fried; Westin).

Scholarly disagreement about how best to characterize the ethical value of privacy is fundamental (Inness). One axis of disagreement concerns whether privacy denotes a value or a state of affairs. A second axis of disagreement concerns whether privacy, presumed to denote a state of affairs, refers to a state of affairs with necessary moral legitimacy or merely contingent moral legitimacy. A third axis of disagreement concerns whether the value of privacy, presumed to denote a state of affairs with only contingent moral legitimacy, should be measured against relevant consequentialist criteria, such as promoting aggregate happiness or efficiency; or deontological criteria, such as respect for personhood, personal identity, or humanity.

From the consequentialist perspective, privacy has value to the extent that it is useful in promoting, for example, aggregate happiness or the diverse interests of individuals, groups, or government. In this vein, scholars commonly argue that privacy has value because it functions to create or enhance human personhood in ways that promote liberal social and political institutions. Privacy practices promote individuality and the formation of self-concept presupposed by democratic self-government. Some accounts stress the utilitarian value to society of restraining government power in the spheres of what John Stuart Mill called "self-regarding" actions.

Scholars also argue that privacy has instrumental value relative to its role in creating and enhancing relationships. The traditional argument is that only in isolation from others can desirable forms of intimacy and friendship flourish; only if individuals and families can seclude themselves from others can the potentially stifling and emotionally explosive social demands of group life be abated. In reply, it is argued that privacy practices have facilitated both the mistreatment of women and children and the disregard for the ideal of aggregate as opposed to individual responsibility. The ethical challenge posed by these criticisms is to describe social arrangements that vigorously protect states of physical and informational privacy in the name of individuality, creativity, family, and free association, but that avoid the subordination and alienation often associated with modern Western liberal societies.

Scholars sometimes explain what they regard as the value of privacy by reference to the importance of personhood and personal dignity to individuals. These arguments draw connections between limited physical and informational access and/or the ability to make important decisions for oneself and the very idea of rational moral autonomy. In his contribution to the 1971 book, Privacy, Stanley I. Benn argued, for example, that the principle of respect for persons provides a moral reason for not interfering with personal privacy. David A. J. Richards, in his 1986 book, Toleration and the Constitution, argued, by appeal to the "social contract" metaphor, for legal privacy protections, stressing the fundamental value of government toleration of the choices individuals make for themselves pertaining to procreation, sexuality, and religion.

Privacy in the United States

The United States has a wealth of state and federal law protecting privacy. Recent federal law has increased legal safeguards for health information privacy at a time when Americans are increasingly open about formerly sensitive health matters.

CULTURAL AND HISTORICAL DIMENSIONS. Focusing on physical and informational privacy, anthropologist Barrington Moore observed in his 1984 book, Privacy, that both the desire for privacy and the ability to satisfy it are unequally distributed among and within human societies. Although some cultures do not emphasize privacy at all, privacy protection practices are found in virtually every human culture (Moore; Altman; Westin). Strikingly, what is treated as private can vary significantly from society to society (Pennock and Chapman). In one culture, defecation and sexual intercourse may be performed openly without embarrassment or shame; in another they are deeply private. One culture shields religious rites in secrecy, whereas another performs them on the commons. Female breasts and breast-feeding require concealment for modesty's sake in one place, but not another. Nuclear family problems are personal information in one society, but they are freely shared with leaders of one's tribe or village elsewhere.

The protection of personal privacy is among the most important public issues in the Western nations of the world (Flaherty; Schwartz and Reidenberg). These nations have in common large, well-developed bureaucracies and advanced information technologies (Bennett). Categories of data that western Europeans and North Americans deem personal include health information, criminal convictions, disciplinary measures, religious beliefs, political opinions, racial origin, trade union membership, sexual life, and intimate private life (Nugter).

U.S. culture is dominated by widely shared aspirations for lifestyles that afford frequent opportunities for privacy and intimacy. In families and friendships, though accountability for sensitive health information is the rule rather than the exception. Partners, kin, and friends rely on one another for health-related advice, comfort and care (Allen, 2003). Although the "taste" for privacy is strong in the United States, it competes with the principle of a "public right to know" reflected in the practices of government and the media. Commercial, professional, and personal relationships of many kinds presuppose a high degree of self-disclosure and physical contact. As a consequence, the United States is not a country in which expectations of physical or informational privacy are easily satisfied.

American culture was not always dominated by articulated concern for privacy. Nor have deeply private lifestyles often been the norm. According to David H. Flaherty, Colonial lifestyle "left little room for privacy or nonconformity even among the free and the affluent" (Flaherty, p. 172). Concerns for physical and informational privacy achieved prominence as public issues for the first time in the nineteenth century, when a sharp increase in technology and industrialization had begun to transform the agrarian and mercantile culture to one of urban capitalism, and when the courts and legislatures began to expressly regulate marriage and family life (Garrow).

According to Alan Westin, nuclear family lifestyles, mobility in work and residence, and the decline of religious authority meant "greater situations of physical and psychological privacy" for mid- and late-nineteenth-century Americans (p. 21). Nevertheless, at about the same time that some middle-class and wealthy Americans were enjoying more privacy than ever before, a number of factors appear to have increased Americans' privacy-related anxieties. The simultaneous growth of crowded cities, the closing of the western frontier, the invention of commercial photography, and the rise of mass circulation newspapers may explain the emergence during the late nineteenth century of public concern about lost privacy (Allen and Mack; Copple).

The development in the early twentieth century of a social welfare bureaucracy and surveillance technologies may have further increased concerns about privacy. Indeed, the Supreme Court's first pronouncement about the right to privacy came in a dissenting opinion in Olmstead v. United States (1928), a case that validated telephonic eavesdropping by government. But the development of powerful computers capable of storing personal data appears to have spawned another, larger wave of concern about privacy in the 1960s and 1970s, the decades of origin for many of the major federal privacy laws that were in force in the early twenty-first century (Miller; Turkington and Allen). Finally, the rhetorical success of legal claims based on the "right to privacy" after 1965 in Supreme Court contraception and abortion cases spawned additional interest in fending off interference with choices people make respecting their bodies, healthcare, families, and lifestyles.

LEGAL DIMENSIONS. Near ubiquitous recognition of the importance of privacy is suggested by the language of key international human-rights documents. Privacy is mentioned, for example, in the Universal Declaration of Human Rights, adopted by the United Nations General Assembly in 1948. Article 12 provides that "No one shall be subjected to arbitrary interference with his privacy, family, home, or correspondence, nor to attacks upon his honor and reputation" and that "Everyone has the right to the protection of the law against such interference or attacks" (Henkin et al.,p. 144). In fact, the law of most modern legal systems prohibits, at least officially, physical privacy invasions and assaults on honor of the sort identified by Article 12. Western nations typically regulate several forms of physical, informational, and decisional privacy. Access to health-related information is limited by statute in most industrialized nations and the European Union (Nugter).

Great Britain and the United States share a common legal heritage and protect many of the same forms of privacy. Yet courts and legislatures in the United States have been more willing than their English counterparts to multiply the number of specific privacy protections. The reasons for this difference are unclear, although one explanation may be greater concerns in Britain about creating rights of uncertain application (Wacks). In the United States privacy interests are protected, often expressly, by tort law, the Constitution, and numerous federal and state statutes.

Tort law. The first privacy rights to be recognized expressly in United States law were rights of physical and informational privacy. The express right to privacy first came into existence through the common-law process of judicial recognition. Endorsed by Louis Brandeis and Samuel Warren in a famous 1890 Harvard Law Review article stressing the importance of freedom from unwanted publicity, the invasion of privacy tort was officially adopted by the Georgia Supreme Court in Pavesich v. New England Life Insurance Company (1905). Many other state courts eventually followed suit.

By 1960, William Prosser could identify, not one, but four common-law privacy rights recognized by courts in the United States. Today, most states have adopted one or more of Prosser's four privacy rights through their courts or legislatures. The influential Restatement of the Law Second: Torts 2d (American Law Institute), a summary and exposition of developments in personal injury law, embraced Prosser's analysis. In states that have adopted Prosser's analysis, a person may bring a privacy-invasion lawsuit claiming highly offensive conduct consisting of either:

1. interference with seclusion, solitude, and anonymity;
2. publication of embarrassing private facts;
3. publicity placing a person in a false light; or
4. appropriation of name, likeness, or identity.

In addition, most states permit privacy-invasion-related claims involving unauthorized publicity; breach of confidence or secrecy; and unfair business practices involving misappropriation, trade secret, trade name, and copyright violations. Plaintiffs have alleged invasion of privacy in cases related to health services. An Oregon physician was sued for disclosing the identity of an adult adoptee's birth mother. A New Yorker whose photograph appeared in a newspaper accompanying a story about an AIDS treatment facility sued the publisher.

Constitutional law. Although the U.S. Constitution makes no express mention of the term privacy itself, the constitutional law of the United States protects physical, informational, and decisional privacy interests. The First Amendment, the guarantor of freedom of speech and association, protects the physical and informational privacy concerns of exclusive clubs or political groups. In effect, the Supreme Court has held that the Fourth Amendment guarantees a right of physical privacy when it limits warrantless search and seizure, and that the Fifth Amendment guarantees a right of informational privacy when it limits compulsory disclosure and self-incrimination. Although the Supreme Court has never held as much, some judges and lawyers maintain that the Ninth Amendment, which provides that the "enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people," implies decisional privacy rights. The Supreme Court has established First and Fourteenth Amendment limits on government record keeping and access to personal information. In Whalen v. Roe (1977), a major Supreme Court case involving a data bank of prescription drug users maintained by New York officials, the Court held that the First and Fourteenth Amendments require states seeking to deter drug abuse to implement confidentiality safeguards.

The U.S. Supreme Court and many lower courts have held that the Constitution protects decisional privacy respecting aspects of health, reproduction, sex, and family life, deriving this brand of privacy from what the court has termed the penumbra of the Bill of Rights and the Fourteenth Amendment. The Fourteenth Amendment, which provides that no state may deprive a person of liberty without due process, is the most frequently cited basis of the decisional privacy right protecting autonomous decision making respecting contraception, abortion, and the termination of medical treatment. Griswold v. Connecticut (1965) and Roe v. Wade (1973) established the right to contraception and abortion. The privacy doctrine that originated in the Griswold and Roe cases has come under repeated attack from critics who stress the absence of a textual basis for reproductive privacy rights. Some critics have urged that gender equality and equal protection of the laws, rather than privacy and liberty, are the core values served by reproductive rights.

In Planned Parenthood of Southeast Pennsylvania v. Casey (1992), the Supreme Court affirmed the essential holding of Roe v. Wade, reiterating the Fourteenth Amendment as protection for reproductive privacy. The Court backed away, however, from Griswold's and Roe's characterization of the right to privacy as a "fundamental" right that cannot be breached except where there is a truly "compelling" governmental interest. Cruzan v. Director, Missouri Department of Health (1990) recognized an adult patient's privacy right—not her parents'—to terminate life-sustaining medical treatment. Yet Cruzan and Casey applied weaker standards of review than Roe v. Wade. Abortion restrictions "rationally related" to a "legitimate state interest" that do not "unduly burden" the woman's constitutional right to privacy are valid. And restrictions on the right to refuse treatment that reasonably relate to a legitimate state interest are also valid.

Statutory law. The U.S. Congress enacted a number of federal statutes after 1970 to protect informational and physical privacy interests. The Privacy Act (1974), the Freedom of Information Act (1974), the Family and Educational Privacy Act (1974), the Right to Financial Privacy Act (1978), and Title V of the Financial Services Modernization Act (2001) protect information privacy by limiting access to personal information held in government, school, and bank records. The federal Employee Polygraph Protection Act protects workers from potentially incriminating self-disclosure in the workplace by limiting use of the lie-detector test. The Electronic Communications Privacy Act (1986) and other major federal statutes protect against intrusive searches using electronic surveillance, wiretapping, and other unauthorized access to telephones or computers. Proposed federal privacy statutes would limit access to genetic information about individuals. HIPAA requires the maintenance of the confidentiality and security of health-related information, including genetic health information.

State statutes in virtually every state address concerns about the privacy of information related to medical care, criminal histories, and adoption. Newer state statutory regulations include the decisional privacy protections of Virginia's Natural Death Act and Pennsylvania's Confidentiality of HIV-Related Information statute. Recently, state constitutions in Montana, California, and Florida have been amended or interpreted to require physical, informational, and decisional privacy protections. For example, in a pre-Casey decision, the Florida high court held that the state constitution protects decisional privacy to the same degree as Roe v. Wade.

Patients' privacy rights. One of the most important areas of health law is the broad field of patients' rights. Discussions of patients' rights include the physical, informational, and decisional privacy rights recognized under tort, constitutional, and statutory law. A Patients' Bill of Rights that would include privacy protections emerged as a policy initiative during the presidency of George W. Bush.

The oldest American legal case decided by reference to rights of privacy, DeMay v. Roberts (1881), vindicated interests in physical privacy and modesty. A Michigan husband and wife successfully sued a physician who permitted an "unprofessional young, unmarried man" to enter their home and help deliver their baby. A century later a married couple in Maine brought Knight v. Penobscot Bay Medical Center (1980), a similar, though unsuccessful, lawsuit claiming that a hospital violated the couple's privacy by permitting a layperson, the spouse of a nurse, to observe delivery of their child through a glass partition from a distance of 12 feet. The issue of whether women should be able to choose who is present at the birth of their children—including whether delivery is undertaken with the aid of a midwife, nurse practitioner, or physician—is clearly both a physical and a decisional privacy issue.

All patients generally may share the obstetrical patient's sense that adequate privacy is lacking in hospitals where well-intentioned medical, administrative, and support staff move freely in and out of (even nominally "private") inpatient wards. The feeling that one's privacy has been invaded may be especially acute in busy, crowded public hospitals serving low-income patients or in any hospital where groups of several physicians, interns, and medical students simultaneously conduct physical examinations and discussions at one's bedside. Some men and women report feeling their privacy invaded by having to share a room in an intensive-care unit with a person of the opposite sex. The law is unclear about the extent to which medical resources or the general written consent to treatment patients give upon admission to hospitals eliminates legitimate expectations of physical and informational privacy. Specific waivers of legal privacy claims may give patients clear notice of the privacy losses associated with treatment in teaching and research hospitals, but arguably they do not eliminate hospitals' ethical obligations to respect privacy to the extent possible.

Moral outrage over the discovery that healthcare providers have recorded, filmed, or photographed a patient for scholarly or research purposes occasionally results in litigation. Respect for privacy would appear to dictate obtaining prior consent to the publication of graphic images of a person, particularly if the person is identifiable in an image or is named in connection with its publication.

The legal importance of obtaining prior informed consent was underscored by the holding of the California court in a highly publicized case, Moore v. Regents of University of California (1990). John Moore brought a multimillion-dollar lawsuit when he discovered that University of California medical researchers who treated him for hairy cell leukemia had failed to disclose that "certain blood products and blood components were of great value in a number of commercial and scientific efforts." Moore's right to privacy claims were based on the notion that exploitation of his blood for commercial purposes was a highly offensive appropriation of a person's name, likeness, or identity compensable as an invasion of privacy under state tort law. According to the California court, a patient has a right to know the medical purpose of treatment and the treating physician's personal economic stake; otherwise treatment is battery, presumably no better than sterilizing a fertile woman or performing a cesarean section on a cancer patient without her consent.

As noted earlier, abortion, physician-assisted suicide, and the right to die are approached in the United States as patient privacy issues. Opponents of laws prohibiting abortions say that state and federal regulations should not prevent women from acting on their own decisions about whether to terminate pregnancy through medical abortion. On the other hand, it is also argued on privacy grounds that women should not be forced or counseled to abort for any reason, including where they are seropositive for the virus that causes AIDS. "Privacy" can signify freedom to choose the circumstances of death for oneself, a family member, or an intimate friend. It means the absence of criminal laws and bureaucratic procedures that constrain the choice to accelerate the death of a person who is terminally ill or to refuse artificial nutrition and hydration to preserve life in a person in a persistent vegetative state. The right to privacy may also prove to be the ethical refuge of supporters of physician-assisted suicide of nonterminally ill, fully competent adults. In Vacco v. Quill (1996) and Washington v. Glucksberg (1996), however, the U.S. Supreme Court ruled that states may outlaw physician-assisted suicide.

The privacy implications of nonvoluntary and routine AIDS testing of obstetrical patients, surgical patients, and newborns have been of great interest to public authorities and private healthcare providers for two reasons. First, nonconsensual testing is a prima facie denial of decisional privacy or autonomy. Some individuals prefer not to be tested and forced to confront the specter of terminal illness. And while this precise concern has never applied to newborns, newborn testing can reveal the HIV status of birth mothers. Second, where medical or insurance providers breach the confidentiality of an HIV- or AIDS-infected person, far-ranging implications for private lives and employment can follow because of prejudice and discrimination. In this context, policy analysts often assert that the individual interest in privacy is outweighed by societal interests, including the societal interest in controlling the spread of deadly disease through inappropriate handling of contaminated blood and other tissues. But societal interests do not always outweigh individual privacy rights.

The federal courts have upheld the mandatory AIDS-testing policies of the U.S. military and the nation's prisons. In Glover v. Eastern Nebraska Community Office of Retardation (1989), however, a federal court struck down a state requirement that all persons working closely with mentally retarded clients disclose their HIV and hepatitis B status and undergo periodic HIV and hepatitis B blood testing. Against the argument that persons working in highly regulated state agencies have lower expectations of privacy, the court stressed that constitutional values do not permit mandatory testing where the risk of disease transmission is extremely low. A similar weighing of the costs of testing against its benefits in view of the low risk of transmission may explain government reluctance to mandate AIDS testing for all dentists, physicians, and other healthcare providers who come in close contact with patients.

Conclusion

Privacy is likely to have an important role in bioethical discussions for some time. The English political philosopher James Fitzjames Stephen wrote in 1873 that "conduct which can be described as indecent is always in one way or another a violation of privacy" (p. 160). These words capture a truth about the broad usage the term privacy enjoys in the health field. Patients and those who care about them consider a diverse spectrum of "indecencies," ranging from maltreatment and breach of confidentiality to interference with decision making, as "invasions of privacy." Accordingly, the ethics, law, and politics of privacy have made what may be an indelible mark on the future of healthcare and health research.

anita l. allen (1995)

revised by author

SEE ALSO: Confidentiality; Privacy and Confidentiality in Research

BIBLIOGRAPHY

Allen, Anita L. 1988. Uneasy Access: Privacy for Women in a Free Society. Totowa, NJ: Rowman and Littlefield.

Allen, Anita L. 2003. Why Privacy Isn't Everything: Feminist Reflections on Personal Accountability. Lanham, MD: Rowman and Littlefield.

Allen, Anita L., and Mack, Erin. 1990. "How Privacy Got Its Gender." Northern Illinois University Law Review 10(3): 441–478.

Altman, Irwin. 1977. "Privacy Regulation: Culturally Universal or Culturally Specific?" Journal of Social Issues 33(3): 66–74.

American Law Institute. 1986. Restatement of the Law Second: Torts 2d. St. Paul, MN: Author.

Arendt, Hannah. 1958. The Human Condition. Chicago: University of Chicago Press.

Benn, Stanley I. 1971. "Privacy, Freedom, and Respect for Persons." In Privacy, ed. J. Roland Pennock and John W. Chapman. New York: Atherton Press.

Bennett, Colin J. 1992. Regulating Privacy: Data Protection and Public Policy in Europe and the United States. Ithaca, NY: Cornell University Press.

Bennett, Rebecca, and Erin, Charles A. 1999. HIV and AIDS: Testing Screening and Confidentiality. Oxford: Oxford University Press.

Bloustein, Edward J. 1978. Individual and Group Privacy. New Brunswick, NJ: Transaction Books.

Bok, Sissela. 1984. Secrets: On the Ethics of Concealment and Revelation. Oxford: Oxford University Press.

Boone, C. Keith. 1983. "Privacy and Community." Social Theory and Practice 9(1): 1–30.

Brandeis, Louis, and Warren, Samuel. 1890. "The Right to Privacy." Harvard Law Review 4: 193–220.

Cohen, Jean L. 2002. Regulating Intimacy: A New Legal Paradigm. Princeton, NJ: Princeton University Press.

Copple, Robert F. 1989. "Privacy and the Frontier Thesis: An American Intersection of Self and Society." American Journal of Jurisprudence 34: 87–131.

Cruzan v. Director, Missouri Department of Health. 497 U.S. 261 (1990).

DeCew, Judith Wagner. 1986. "The Scope of Privacy in Law and Ethics." Law and Philosophy 5: 145–173.

DeCew, Judith Wagner. 1987. "Defending the 'Private' in Constitutional Privacy." Journal of Value Inquiry 21: 171–184.

DeMay v. Roberts. 46 Mich. 160, 9 N.W. 146 (1881).

Ely, John Hart. 1973. "The Wages of Crying Wolf: A Comment on Roe v. Wade." Yale Law Journal 89: 920–949.

Etzoni, Amitai. 1999. The Limits of Privacy. New York: Basic.

Feinberg, Joel. 1983. "Autonomy, Sovereignty, and Privacy: Moral Ideals and the Constitution?" Notre Dame Law Review 58: 445–492.

Flaherty, David H. 1972. Privacy in Colonial New England. Charlottesville: University Press of Virginia.

Flaherty, David H. 1989. Protecting Privacy in Surveillance Societies: The Federal Republic of Germany, Sweden, France, Canada, and the United States. Chapel Hill: University of North Carolina Press.

Fried, Charles. 1968. "Privacy." Yale Law Journal 77: 475–493.

Friedrich, Carl. 1971. "Secrecy versus Privacy: The Democratic Dilemma." In Privacy, ed. J. Roland Pennock and John W. Chapman. New York: Atherton Press.

Garrow, David J. 1994. Liberty and Sexuality: The Right to Privacy and the Making of Roe v. Wade. New York: Macmillan.

Gavison, Ruth. 1980. "Privacy and the Limits of Law." Yale Law Journal 89(3): 421–471.

Gerstein, Robert S. 1978. "Intimacy and Privacy." Ethics 89: 76–81.

Glover v. Eastern Nebraska Community Office of Retardation. 867 F.2d 461 (1989).

Goldman, Janlori, and Hudson, Zoe. 2000. Privacy: Report on the Privacy Policies and Practices of Health Web Sites. Washington, D.C.: Georgetown University, Health Privacy Project.

Goston, Lawrence O., Hodge, James G., Jr., and Burghardt, Mira. 2002. "Balancing Communal Goods and Personal Privacy under a National Health Information Privacy Rule." Saint Louis University Law Journal 46: 5–35.

Greenawalt, Kent. 1974. "Privacy and Its Legal Protection." Hastings Center Studies 2(3): 45–68.

Griswold v. Connecticut. 381 U.S. 479; 85 Sup. Ct. 1678 (1965).

Habermas, Jurgen. 1989. The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society, tr. Thomas Burger. Cambridge, MA: MIT Press.

Henkin, Louis; Pugh, Richard; Schachter, Oscar; et al. 1987. Basic Documents Supplement to International Law: Cases and Materials. St. Paul: MN: West Publishing.

Hodge, James G.; Gostin, Lawrence; and Jacobson, Peter D. 1999. "Legal Issues concerning Electronic Health Information Privacy." Journal of the American Medical Association 282: 1466–1471.

Humber, James M., and Almeder, Robert F. 2001. Privacy in Health Care. Totowa, NJ: Humana Press.

Inness, Julie C. 1992. Privacy, Intimacy, and Isolation. New York: Oxford University Press.

Institute of Medicine (U.S.). Committee on the Role of Institutional Review Boards in Health Services Research Data Privacy Protection. 2000. Protecting Data Privacy in Health Services Research. Washington, D.C.: National Academy Press.

Knight v. Penobscot Bay Medical Center. 420 A.2d 915 (1980).

Kupfer, Joseph. 1987. "Privacy, Autonomy, and Self-Concept." American Philosophical Quarterly 24(1): 81–89.

MacKinnon, Catherine A. 1991. "Reflections on Sex Equality under the Law." Yale Law Journal 100(5): 1281–1328.

McCloskey, H. J. 1980. "Privacy and the Right to Privacy." Philosophy 55: 17–38.

Mill, John Stuart. 1859 (reprint 1978). On Liberty, ed. Elizabeth Rapaport. Indianapolis, IN: Hackett.

Miller, Arthur R. 1971. The Assault on Privacy: Computers, Data Banks, and Dossiers. Ann Arbor: University of Michigan Press.

Moore, Barrington. 1984. Privacy: Studies in Social and Cultural History. Armonk, NY: M. E. Sharpe.

Moore v. Regents of University of California. 51 Cal.3d 120, 271 Cal. Rpt. 146, 793 P.2d 479 (1990).

Morris, Debra. 2000. "Privacy, Privation, Perversity: Toward New Representations of the Personal." Signs: Journal of Women in Culture and Society 25(2): 323–351.

Nugter, A. C. M. 1990. Transborder Flow of Personal Data within the EC: A Comparative Analysis of the Privacy Statutes of the Federal Republic of Germany, France, the United Kingdom, and the Netherlands and Their Impact on the Private Sector. Boston: Kluwer Law and Taxation Publishers.

Olmstead v. United States. 277 U.S. 438 (1928).

Parent, William A. 1983a. "A New Definition of Privacy for the Law." Law and Philosophy 2(3): 305–338.

Parent, William A. 1983b. "Recent Work on the Concept of Privacy." American Philosophical Quarterly 20(4): 341–355.

Pavesich v. New England Life Insurance Company. 122 Ga. 190; 50 S.E. 68 (1905).

Pennock, J. Roland, and Chapman, John W., eds. 1971. Privacy. New York: Atherton Press.

Planned Parenthood of Southeast Pennsylvania v. Casey. 112 Sup. Ct. 2791 (1992).

Powers, Madison. 1994. "Privacy and the Control of Genetic Information." In The Genetic Frontier: Ethics, Law, and Policy, ed. Mark S. Frankel and Albert Teich. Washington, D.C.: American Association for the Advancement of Science.

Prosser, William. 1960. "Privacy." California Law Review 48(3): 383–423.

Rachels, James. 1975. "Why Privacy Is Important." Philosophy and Public Affairs 4(4): 323–333.

Reiman, Jeffrey H. 1976. "Privacy, Intimacy, and Personhood." Philosophy and Public Affairs 6(1): 26–44.

Richards, David A. J. 1986. Toleration and the Constitution. Oxford: Oxford University Press.

Roe v. Wade. 410 U.S. 113; 35 L.Ed.2d 147; 93 Sup. Ct. 705 (1973).

Rubenfeld, Jed. 1989. "The Right to Privacy." Harvard Law Review 102: 737–806.

Scheppele, Kim L. 1988. Legal Secrets: Equality and Efficiency in the Common Law. Chicago: University of Chicago Press.

Schneider, Carl D. 1977. Shame, Exposure, and Privacy. Boston: Beacon.

Schoeman, Ferdinand David. 1992. Privacy and Social Freedom. Cambridge, UK: Cambridge University Press.

Schoeman, Ferdinand David, ed. 1984. Philosophical Dimensions of Privacy: An Anthology. Cambridge, UK: Cambridge University Press.

Schwartz, Paul, and Reidenberg, Joel. 1996. Privacy and Data Protection. Charlottesville, VA: Mitchie Law Publishers.

Stephen, James Fitzjames. 1873 (reprint 1967). Liberty, Equality, Fraternity, ed. R. J. White. Cambridge, UK: Cambridge University Press.

Storr, Anthony. 1988. Solitude: A Return to the Self. New York: Free Press.

Tefft, Stanton K., ed. 1980. Secrecy: A Cross-Cultural Perspective. New York: Human Sciences Press.

Turkington, Richard C., and Allen, Anita. 2002. Privacy Law: Cases and Materials. Minneapolis, MN: West Publishing Company.

United Nations. General Assembly. 1948. Universal Declaration of Human Rights: Adopted the 10th December 1948 in Plenary Session by the General Assembly of the United Nations. Available from the <www.unesco.org>.

Vacco v. Quill. 518 U.S. 1055 (1996).

Wacks, Raymond. 1989. Personal Information: Privacy and the Law. Oxford: Clarendon Press.

Washington v. Glucksberg. 518 U.S. 1057 (1996).

Westin, Alan F. 1967. Privacy and Freedom. New York: Atheneum.

Whalen v. Roe. 429 U.S. 589; 97 Sup. Ct. 869 (1977).

Young, John, ed. 1978. Privacy. Chichester, NY: Wiley.