Confidentiality has its roots in the human practice of sharing and keeping secrets (Bok). For children, the desire to keep a secret is a manifestation of an emerging sense of self; the desire to share a secret stems from a need to retain or establish intimate relationships with others (Ekstein and Caruth). The willingness to share secrets presupposes an implicit trust or an explicit promise that they will be dept. Keeping and sharing secrets is a more complex social practice among adults. Some adults keep secrets simply to preserve their personal privacy; others may have something illegal or immoral to hide. Some persons do not reveal private thoughts, feelings, or behavior for fear of embarrassment, exploitation, stigmatization, or discrimination. Still others feel a need to disclose secrets to others to help resolve emotional conflicts or seek solutions to problems arising out of interpersonal relationships. The sharing and keeping of secrets among friends, for instance, creates a context in which ethical issues concerning promises, trust, loyalty, and interests of others may come into conflict. For example, I may promise a friend to keep a secret that she feels an urgent need to tell me. She trusts me not to tell anyone else about her revelation. Out of loyalty to my friend, I promise in advance to keep her secret. But I am thrown into a moral conflict when she unexpectedly discloses her impulse and plan to kill a family member who she believes is plotting against her. I realize that my obligations to keep my promise and preserve loyalty and trust conflict with a desire, if not a responsibility, to prevent my friend's harm to herself as well as serious harm to another. Do I preserve confidentiality or protect others? Similar ethical conflicts arise for health professionals and their clients or patients.
The following discussion clarifies the concept of confidentiality and the related ideas of privacy and privileged communication in healthcare settings. The rights of clients/patients and the responsibilities of health professionals to their clients, their professions, and society bring out key ethical issues. Legal regulations both protect and limit confidentiality, sometimes in ways that create ethical conflicts for clients as well as professionals. In healthcare contexts neither absolute protection nor total abandonment of confidentiality is plausible. Yet sometimes it is uncertain where boundaries should be drawn because legitimate interests come into conflict. Personal privacy, professional integrity, effective care, economic considerations, and public health and safety influence both general policies and specific practices concerning confidentiality.
Confidentiality is closely related to the broad concept of privacy and the narrower concept of privileged communications. All three concepts share the idea of limiting access of others in certain respects (Gavison; Allen). Privacy refers to limiting access of others to one's body or mind, such as through physical contact or disclosure of thoughts or feelings. The idea of limited access describes privacy in a neutral way. But privacy is closely linked to normative values. Privacy is usually thought to be good; it is something that individuals typically desire to preserve, protect, and control. Thus privacy and a right to privacy are sometimes not clearly distinguished. In law and ethics "privacy" usually refers to privacy rights as well as limited access. Thus, privacy in law is linked to freedom from intrusion by the state or third persons. It may designate a domain of personal decision, usually about important matters such as personal associations, abortion, or bodily integrity.
Confidentiality concerns the communication of private and personal information from one person to another where it is expected that the recipient of the information, such as a health professional, will not ordinarily disclose the confidential information to third persons. In other words, other persons, unless properly authorized, have limited access to confidential information. Confidentiality, like privacy, is valued because it protects individual preferences and rights.
Privileged communications are those confidential communications that the law protects against disclosure in legal settings. Once again, others have limited access to confidential information. A person who has disclosed private information to a spouse or certain professionals (doctor, lawyer, priest, psychotherapist) may restrict his or her testimony in a legal context, subject to certain exceptions (Smith-Bell and Winslade; Weiner and Wettstein).
Privacy and confidentiality are alike in that each stands as a polar opposite to the idea of "public": what is private and confidential is not public. Yet privacy and confidentiality are not the same. Privacy can refer to singular features of persons, such as privacy of thoughts, feelings, or fantasies. Confidentiality always refers to relational contexts involving two or more persons. Privacy can also refer to relational contexts, such as privacy of personal associations or private records. Thus, in this respect the concepts overlap. In many relational contexts the terms "privacy" and "confidentiality" are used interchangeably and sometimes loosely. Professional codes of ethics, for example, often use these terms in this way (Winslade and Ross).
It should be noted, however, that privacy and confidentiality are significantly different in one important respect. Relinquishing personal privacy is a precondition for establishing confidentiality. Confidentiality requires a relationship of at least two persons, one of whom exposes or discloses private data to the other. An expectation of confidentiality arises out of a special relationship between the parties created by their respective roles (doctor-patient, lawyer-client) or by an explicit promise. Confidentiality, as with its linguistic origins (con and fides: with fidelity), assumes a relationship based on trust or fidelity< Between strangers there is no expectation of trust. Privacy is given up because confidentiality is assured; unauthorized persons are excluded.
Yet confidentiality does not flow simply from the fact that personal or private information is divulged to another. If persons choose to announce their sexual preferences in street-corner speeches, in books, or on billboards, this information, though private in its origin, is not confidential. Confidentiality depends not only on the information, but also on the context of the disclosure as well as on the relationship between the discloser and the recipient of the information. Confidentiality applies to personal, sensitive, sometimes potentially harmful or embarrassing private information disclosed within the confines of a special relationship. It should be noted, however, that the disclosure of private information from client to professional is one-way, unlike other interpersonal confidentiality contexts (Winslade and Ross).
Rights of Patients/Clients
When clients enter into a healthcare relationship, they relinquish some personal privacy in permitting physical examinations, taking tests, or giving social and medical histories. Usually this information is documented in a medical record, often stored electronically and held by the health professional or an institution. In exchange for the loss of privacy, clients expect and are promised some degree of confidentiality. In general, all personal medical information is confidential unless the client requests disclosure to third parties or a specific exception permits or requires disclosure. For example, clients may request disclosure to obtain insurance coverage or permit disclosure to a scientific researcher. The law requires health professionals to report certain infectious diseases to public-health departments or to report suspected child abuse to appropriate agencies. Unilateral disclosure of otherwise confidential information to third parties by health professionals or institutions is unethical unless it is authorized by the client or by law.
In the United States and other Western societies, the values of privacy, confidentiality, and privileged communications are closely tied to the values of personal rights and self-determination. These rights include freedom from the intrusion of others into one's private life, thoughts, conduct, or relationships. Interest in protection of personal rights has grown in response to public and private surveillance of individuals through the use of data bases to collect, store, and transmit information about individuals (Flaherty). In the United States the ideas of privacy and confidentiality have generated much legal and philosophical scholarship, influenced important judicial decisions, and prompted federal and state legislation (Winslade and Ross). The legal doctrine and ethical ideal of informed consent in healthcare reinforces the importance of personal autonomy (Beauchamp and Childress). The right to informed consent, applied specifically to confidentiality, gives patients/clients the right to control disclosure of confidential information. Other countries with less individualistic traditions do not place such high ethical value on privacy or personal rights. Even persons in cultures where privacy is not a prominent value can be harmed, however, by revelations of personal information (Macklin).
Traditional ethical theories can be interpreted to provide additional support for the values of privacy and confidentiality. Deontology stresses the rights of persons and the duties of others to respect persons as ends in themselves, to respect especially their personal rights. To the extent that the social practices tied to privacy and confidentiality enhance the welfare of all, utilitarianism may also be invoked on behalf of individuals. Virtue theory advocates personal moral aspiration and achievement. Privacy and confidentiality provide a context and an opportunity for cultivation of virtues without outside interference.
Despite the value of privacy and confidentiality to individuals, however, other values—such as collective need for information or public health and safety—limit individual rights. Confidentiality conflicts often arise about information contained in medical records. Clients usually want information to remain confidential. Others—such as employers, insurers, family members, researchers, and litigants— exert pressure to limit confidentiality and to gain access to personal information. Health professionals are often pulled in both directions by their professional loyalty to patients/clients and their broader social responsibilities.
Responsibilities of Health Professionals
The responsibilities of health professionals, as articulated in codes of professional ethics, reinforce the value of confidentiality. For example, the Hippocratic oath states:
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about. (see Appendix)
Modern codes of professional ethics, like the Principles of Ethics of the American Medical Association, instruct physicians to "safeguard patient confidences within the constraints of the law" (see Appendix). Similarly, ethics codes for psychotherapists, nurses, and other allied health professionals make general, though not always coherent, reference to protection of professional-client confidentiality (Winslade and Ross). The American Psychiatric Association, however, has also issued detailed official Guidelines on Confidentiality pertaining to special situations, records, special settings, and the legal process (Committee on Confidentiality). The American Bar Association has offered a handbook, AIDS/HIV and Confidentiality Model Policy andProcedures, that addresses the value of confidentiality, consent to disclosures, third-party access to information, and penalties for unauthorized disclosures (Rennert). The Council on Ethical and Judicial Affairs of the American Medical Association (1992) outlines the scope and value of confidentiality and addresses in detail confidentiality in the context of computerized medical records. These documents stress individual rights and specify professional responsibilities concerning confidentiality.
Despite the explicit attention given to confidentiality in oaths and codes, practical ethical problems arise, occasionally causing heated controversy. For instance, in 1991 an authorized biography of the deceased poet Anne Sexton relied in part upon audiotapes of psychotherapy sessions. One of Sexton's psychiatrists permitted the biographer to listen to some 300 hours of psychotherapy tapes. Prior to the publication of the biography, a front-page story in the New York Times about the disclosure of the tapes to the biographer generated a furious ethical debate. On the one hand, some critics believed that release of the tapes violated the deceased patient's privacy. Others pointed out the harm to surviving family members. Still others stressed the duty of the psychiatrist not to reveal anything about the content of therapy. Unless the therapist was required by law to release the information on the tapes, these critics argued, confidentiality should have been preserved. On the other hand, the psychiatrist claimed that his duty was primarily to protect his patient's interests—including her interest in self-revelation, in being understood, and in helping others. The psychiatrist believed that the patient, when competent, had specifically authorized him to use his own best judgment about what to do with the tapes. He also believed that he should cooperate with the request of the patient's literary executor—her daughter—to help make the biography accurate and complete. None of the relevant ethics codes sufficiently clarified or specifically addressed a case of this kind. Although charges were brought that the psychiatrist violated the code of ethics of the American Psychiatric Association, eventually a decision was reached that no ethics violation occurred. But a still-unsettled controversy swirls around these issues.
Professionals are often more aware of confidentiality issues than patients or clients. Professionals realize that privacy and confidentiality may give way to the institutional, governmental, and other third-party pressures for specific information about patients or clients. Health professionals desire to protect the integrity and special value of the professional-client relationship itself. Confidentiality is one basis of professionals' reciprocity with clients who reveal private information. (Other aspects of reciprocity include the clients' payment for the professionals' services in response to the professionals' expertise to meet the clients' needs.)
It should be emphasized that the primary justification for confidentiality is derived from the individual rights of clients and is supplemented by the responsibilities of professionals and the benefits of the healthcare relationship. This is why the client, rather than the health professional, determines what information is to remain confidential. Except where laws or other rules limit clients' rights to confidentiality, the client may not only request but require professionals to disclose otherwise confidential information. It is, after all, the client's private information that has been revealed to the professional.
Some recent critics, including feminist theorists, have questioned the adequacy of rights-based approaches. They argue that an ethics of care or caring must take account of a web of relationships, emotions, and values that include but go beyond individual rights. A care-based ethics stresses the interactive relationships, not only of patients and clinicians, but also families and society. Within the context of caring, humans—especially those who experience special suffering or discrimination—need more than just protection of their legal rights. In the specific context of privacy and confidentiality in medical genetics, for example, an ethics of care rather than rights may better explain the moral reasoning of geneticists (Wertz and Fletcher). This is discussed further in the later section on genetic and other medical screening.
Other critics think that the preservation of confidentiality should take priority over clients' and professionals' autonomy. This idea is based on the idea that total confidentiality is essential to protect both the integrity and the effectiveness of the professional-client relationship. No third parties should ever be permitted to penetrate the boundaries of a protected professional relationship. Neither the client nor the professional, according to this view, should be required or even permitted to disclose confidential information. Something close to this extreme position was considered but rejected by the California Supreme Court in Lifshutz (1970). Neither professional organizations nor their ethics codes endorse this idea, but it does highlight the importance that can be ascribed to confidentiality.
Even if the ideal of complete confidentiality cannot be justified in theory, it can sometimes be achieved in practice. A dyadic, exclusive relationship between client and health professional can sometimes fully preserve confidentiality. For example, a client establishes a relationship with a psychotherapist to explore the meaning of a significant personal loss. The client may not want others to know about the consultation. It is nobody else's business.
The therapist's office may have a separate entrance and exit to decrease the likelihood that clients will encounter each other. The therapist may answer personally all phone calls. The therapist may keep no client-specific records and take no notes. The client may pay cash, not file a claim for insurance coverage, explicitly request that all discussions be kept confidential, and take other precautions to prevent others from learning even that the relationship with the therapist exists at all. The client reveals his or her feelings, fantasies, thoughts, or dreams only to the therapist, who seeks to understand and help interpret their meaning only to the client.
If client confidentiality and professional secrecy were always as unambiguous as the foregoing scenario, there would be little more to say. However, professionals as well as clients have widely divergent attitudes, beliefs, expectations, and values concerning confidentiality (Wettstein). A few professionals espouse the absolute value of confidentiality in dyadic therapeutic relationships while many others acknowledge only its limited and relative value. Others lament the declining value of confidentiality while accepting the encroachment of legal, economic, public-health and safety, or research interests. A few others view confidentiality as an inflated value that some professionals or clients use as a shield to conceal fraud, malpractice, or even criminal activity.
Rather than a simple dyadic relationship, a more complex, polycentric model is necessary to capture the nuances of confidentiality in healthcare. Clients, health professionals, and third parties may have varying claims on ethical grounds to protection of or access to confidential information. Clients may waive their rights to confidentiality to obtain other benefits such as insurance coverage or employment. Professionals may discern a conflict between ethical obligations to their clients and legally required reports. Third parties may have a legitimate need to know otherwise confidential information to assess quality of healthcare services, uncover fraud, or determine appropriate allocations of healthcare resources. Loss of confidentiality may result not only from ethical, legal, or economic factors, but also because of client ignorance or misunderstanding, professional or institutional carelessness, or third-party overreaching. The interplay of those various factors can best be understood by examining in more detail selected problem areas where confidentiality comes into conflict with competing ethical and social interests.
The acquired immunodeficiency syndrome (AIDS) epidemic brings with it a full range of confidentiality issues. Patients who think that they might be HIV-positive are reluctant to be tested for fear that disclosure of such sensitive information may cause them to lose employment or insurance coverage or may make them subject to other types of discrimination. Yet if they are not tested, the benefits of clinical care to diminish the damage of the disease are not available. Patients who know that they are HIV-positive may not want others to know of their status to prevent discrimination. But third parties, such as sexual partners, who are at risk of being infected with a lethal virus, have a legitimate interest in access to otherwise confidential information. If the infected person is unwilling to inform others who may be at risk of getting AIDS, health professionals may be permitted or even required to warn persons who have been or may be put at risk of being infected. Family members may want to know why their relative is sick; they may need to know if they become caretakers. But patients may not be willing to disclose their diagnosis. Healthcare workers want to know their patients' HIV status just as patients want to know if their caretakers are infected. Both desire to avoid becoming infected themselves. Those who are at risk of infection may have a justifiable need to know; others may not.
Confidentiality is not the only value at stake, but it does impose substantial burdens on others. For example, in institutional settings, confidentiality of personal information, such as a patient's diagnosis, must be protected by written policies and actual practices. In a recent court case in Maryland, a hospital failed to protect adequately a patient's medical record that included a diagnosis of AIDS. It is not sufficient to state a policy that access to medical records is limited. It is also necessary to have and implement policies that actually restrict physical access to the records (Brannigan). The hospital was negligent because it did not go far enough to limit physical access of unauthorized persons to the records.
Legal rules that require health professionals to report child or elder abuse, infectious diseases, or gunshot wounds preempt many of the specific ethical conflicts between confidentiality and public health or safety. However, not all ethical issues are resolved by legal rules. For example, some child-abusereporting laws are overly broad; health professionals may fail to make mandated reports in part because of the value ascribed to client confidentiality. Other reporting laws are so narrow that protection of threatened victims is undermined by confidentiality rules and practices (Miller and Weinstock). Some commentators have pointed out, for example, the conflicts created by statutes that require the reporting of not only actual but also suspected child abusers. Some parents alleged to have abused their children have been required to undergo therapy; but to require them to admit abuse before conducting therapy conflicts with the constitutional privilege against self-incrimination.
Professionals, caught between the need for confidentiality in therapy and the legal demand for reporting abuse, sometimes underreport abuse; they protect therapeutic relationships at the risk of legal liability. Other professionals may overreport child abuse because of their concerns about legal liability, strained therapeutic relationships, vulnerability of potential victims, or uncertainty about the value of confidentiality. Some commentators have suggested that child-abuse statutes should be revised to be more specific and limited, requiring professionals to report only when their patients are victims of child abuse, but to give professionals greater discretion about whether to report abusers who are in treatment (Smith-Bell and Winslade).
Another ethical problem for health professionals that arises in connection with legally required disclosures of otherwise confidential information is what to tell clients prior to or near the outset of therapy. If clients are inadequately apprised about the limits of confidentiality, their trust in health professionals is damaged and their relationship may be ruptured. If clients are fully advised of the legal limits placed on confidentiality, they may withhold essential information, terminate therapy, or not even start it. A further problem is that professionals may not know precisely where legal lines have been drawn. For example, a therapist may know that notification must be made to authorities but may not know how much, if any, of the content of therapy must he disclosed.
Genetic and Other Medical Screening
Genetic and other types of medical screening by epidemiologists, physicians, employers, schools, and other public and private agencies give rise to situations in which confidentiality is threatened by a demand for personal medical information. Individuals who are screened want to control information about themselves to prevent stigma, loss of insurance or employment, or other forms of discrimination. Screeners desire access to such information to promote their interests in knowledge, scientific discovery, publication, or economic considerations as well as therapeutic purposes. Control over the information raises moral issues as well as practical problems. These values must be balanced against individuals' rights to preserve their informational privacy. Blood tests, family medical histories, personal medical histories, DNA assays, and data banking, for instance, all raise questions about confidentiality, access, and control of personal information (De Gorgey). Lack of consensus about ethical priorities, gaps in legal policies and remedies to individuals, and political uncertainty about jurisdiction and control over medical screening combine to create controversy. Protection of individual rights of privacy and confidentiality requires careful monitoring of the use of data banks to store information obtained by the Human Genome Project (Macklin).
Health professionals in genetics differ in their beliefs about the value of privacy and confidentiality. Considerable disagreement has been documented, for example, in an international study in nineteen countries of the attitudes of geneticists toward privacy and disclosure. These health professionals were asked to respond to vignettes concerning disclosure of false paternity; of a patient's genetic makeup to a spouse; to relatives at genetic risk; of ambiguous test results; and to institutional third parties, such as employers and insurers (Wertz and Fletcher). Some consensus as well as numerous differences were discovered among the geneticists' opinions about what disclosures are appropriate. Dorothy Wertz and John Fletcher also found that geneticists' reasoning was more likely to be based on the complex needs and relationships of the various parties rather than the rights of individuals. A care-based ethics approach poses a theoretical and practical alternative to a rights-based approach.
Legal Protections and Limitations
Legal protection of confidentiality in the United States has been sporadic and uneven. The 1974 Federal Privacy Act(P.L. 93–579) included some medical information and records; its passage signaled heightened congressional awareness of threats to privacy and confidentiality. The National Privacy Commission's report (U.S. Domestic Council, 1976) seemed to set the stage for further protective federal legislation. Several subsequent attempts to pass comprehensive federal laws to protect medical information failed; a patchwork of state statutes provides only limited protection of patients' confidentiality. The reason is that patients' interests in confidentiality are balanced against powerful interests of third parties, such as healthcare payers, governmental agencies, researchers, and law-enforcement agencies, who wish to have access to otherwise confidential medical information (Hendricks et al.).
Courts have been as hesitant as federal and state legislatures to provide stringent protection of patient confidentiality. The U. S. Supreme Court considered but rejected the idea that patients enjoy a constitutional right to "informational privacy" with regard to treatment records (Whalen v. Roe ). This decision was rendered when the rhetoric of privacy was prominent in Supreme Court opinions; in the 1980s the right to privacy was restricted, and the rhetoric of privacy diminished. State courts, such as those in Florida and California, whose constitutions make explicit reference to a right to privacy, have been more inclined to protect confidentiality of medical information. But state laws provide infrequently enforced bureaucratic protections or opportunities for recovery of damages only after confidentiality has been violated. Even then, litigation is rare because patients are reluctant to further expose confidential matters, damages are difficult to prove, and awards are often limited by statute (Winslade).
In some settings, such as substance-abuse treatment programs, the federal government has established special rules to protect confidentiality. To encourage persons in need of treatment to enter substance-abuse programs, records are not disclosed to law-enforcement agencies that might otherwise seek to prosecute substance abusers. In sensitive human subject research, special "privacy certificates" can be obtained by researchers from the federal government to give added protection to confidential information. Similarly, coded and locked files, limited access even to authorized personnel, and other precautionary measures against leakage further enhance confidentiality (McCarthy and Porter).
Public concern about confidentiality surfaces periodically, especially concerning the potential evils of misuses of patient-identifiable information. For example, implications of the Human Genome Project and healthcare reform have most recently evoked anxiety about discrimination, violation of personal rights, and commerce in patient information. The potential for a new healthcare information infrastructure that relies heavily on computer technology to facilitate the flow of medical information dramatically increases the threat to confidentiality of medical records (Brannigan). Recent commentaries remind us that current legal policies are inadequate to protect individuals against unwarranted disclosure, to provide security for complex medical-information systems, and to preserve individuals' rights to consent and control the uses of personal medical information (Alpert; Gostin et al.).
A specific area of law that directly affects confidentiality concerns the obligations of psychotherapists whose potentially violent patients place other individuals at risk of harm. The California Supreme Court, in the case of Tarasoff v. Regents of the University of California (1974), ruled that psychotherapists of dangerous patients have a duty to use reasonable care to protect threatened victims from harm. To do so may require the disclosure of otherwise confidential patient information. In balancing public safety and confidentiality, the Court observed that "the protective privilege ends where the public peril begins."
In the Tarasoff case, a psychotherapist believed that his patient was potentially dangerous to a young woman who had rejected his interest in her. The patient was obsessed with her at the expense of his studies, his work, and his friends. When the patient talked of revenge and was thought to have a gun, the therapist sought to have his patient evaluated for involuntary hospitalization. But the police declined to bring the patient in for an assessment of his mental status. The patient, angry with his therapist, abruptly terminated treatment. A couple of months later the former patient killed the young woman. Her parents sued the therapists and their employer for failing to warn the victim or her family about the dangerous patient. Although this case was settled out of court without a trial, the reasonableprotection rule was articulated by the court for future cases.
Subsequently, a series of judicial decisions have elaborated the duty of psychotherapists to third parties. Some courts have restricted the duty to situations in which there is an imminent threat of serious violence toward an identifiable victim. Others have focused on the broader duty of health professionals to control the conduct of the dangerous patient. Still others have applied the Tarasoff standard even when the risk to others is neither serious nor specific. And a few courts have protected confidentiality rather than endorse the Tarasoff standard (Felthous).
The complexity of particular cases and the variability of judicial interpretations of facts and laws inevitably cause some uncertainty. In this context, as in many others, confidentiality is limited by other important values. For example, suppose a voluntary psychotic in-patient with no history of violence leaves the hospital against medical advice. He leaves behind some written notes that include violent fantasies about a family member. His therapist discovers the notes (which were left unsealed). Assume the therapist consults the patient, who demands confidentiality; but the therapist is concerned that the patient may be dangerous. The therapist must assess the probability of harm to the patient or the potential victim, consider alternatives to revealing confidential information, and decide what, if anything, to tell the patient, the threatened victim, or others. This delicate balancing inevitably occurs in contexts where information is incomplete, contextual nuances are elusive, and human behavior is notoriously difficult to predict. Nevertheless, decisions must be made and actions taken that will affect the scope of confidentiality as well as bring about other consequences.
Information about Limits of Confidentiality
When entering into a professional-client relationship, clients have a right to receive explicit information about the scope and limits of confidentiality. Most nonprofessionals assume that disclosures made in the context of healthcare are confidential (Weiss). Most clients are uninformed about the limits of confidentiality and pressures to reveal presumably confidential information to third parties. Some clients realize that there are legal and ethical restrictions on confidentiality in healthcare, but others learn of them only after an undesired disclosure (Siegler).
Clients for whom confidentiality is especially important may take steps to preserve it. For example, a medical patient who chooses to file an insurance claim may request the right to review all documents released to the insurance carrier. Or the patient may pay privately rather than file an insurance claim. Other clients may be less concerned with confidentiality. Clients have a responsibility to inform themselves about what expectations about confidentiality are reasonable; then they will not be surprised or dismayed because of false assumptions about confidentiality.
Professionals have a responsibility to inform themselves as well as their clients about legal, ethical, and practical aspects of confidentiality. For example, neither patients nor health professionals usually are familiar with the practices of insurance companies concerning redisclosure of confidential information. Patients often sign a blanket waiver of confidentiality in order to obtain insurance benefits. This information may then be sold by the insurer to the Medical Information Bureau, a clearinghouse to protect against insurance fraud. This goal is laudable, but the data-banking process may include erroneous information that is difficult to detect or correct. In addition, many other interests outside healthcare—such as employers, government agencies, educational institutions, and the media—may gain access to information contained in these data bases (Linowes; Alpert).
At the very least, professionals should ask their clients what they want to know about confidentiality. Some professionals prepare a disclosure statement to give each new client, that is, a document that outlines confidentiality practices the particular professional follows. Policies and procedures concerning written medical records might be given to each new client. Further conversation, including clients' questions and professionals' answers, can clarify details that written statements may not address. Because professionals, like their clients, may differ in their attitudes toward confidentiality, it is important that disclosures about confidentiality be particularized. For example, the values of a psychoanalyst in private practice who never publishes patient case reports significantly differs from those of a research-oriented psychoanalyst who tapes and transcribes every session and publishes detailed case reports. Each should fully inform clients about the nature of his or her practice (Stoller).
Professionals have an obligation to take precautionary measures to protect confidentiality even if their clients have not requested it. Professionals should assume that all client information (including the very existence of the professional client relationship as well as personal and private information revealed is strictly personal and private information revealed) is strictly confidential unless the client has requested or waived disclosure or unless the law requires it. Professionals should advise their clients of required disclosures, inform them of waivers, explore with them the consequences of disclosing or not disclosing information, and examine the reasons for and against disclosure. But clients retain the authority to decide what voluntary disclosures are to be made to third parties (Winslade and Ross).
Professionals also have a special responsibility to protect confidential client information from leakage through lax office procedures, professional or personal gossip, or the inappropriate inquiries of unauthorized persons. This is particularly problematic in institutional settings, where many individuals may have routine access to patient information contained in medical records (Siegler). As computerization of medical records expands further and information storage, retrieval, and distribution technologies become more sophisticated, the need for professionals' vigilance increases.
Many third parties—government officials and agencies, insurance interests, employers, family members, researchers, and others—seek specific information about particular patients. Third parties should not assume, however, that mere interest gives them legitimate authority to have access to confidential information. Third parties have a responsibility to justify to patients and professionals their need for access to confidential information. In some instances, this may require only a routine inquiry and documentation, but in other situations, professionals may find it necessary to confirm that their patients have requested, waived, or forfeited their rights to confidentiality. Too often, professionals, especially in an institutional setting, capitulate to pressure to disclose more information than necessary to third parties. At the very least, third parties as well as professionals should notify patients when access is sought, how it will be used, and whether the information will be redisclosed to anyone else. If appropriate disclosures are made to patients before access to confidential information is granted to third parties, not only will confidentiality be better preserved, but patients will also be better served.
william j. winslade (1995)
SEE ALSO: Autonomy; Beneficence; Genetic Testing and Screening: Predictive Genetic Testing; Healing; Healthcare Systems; Human Dignity; Human Rights; Paternalism; Pediatrics: Adolescents; Profession and Professional Ethics; Public Health Law
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Confidentiality relates to the duty to maintain confidence and thereby respect privacy. People's right to privacy is enshrined in Article 12 of the United Nations (UN) Universal Declaration of Human Rights (1948). UN member countries are morally, if not legally, bound by such declarations. Privacy relates to personal information that a person would not wish others to know without prior authorization. Under the ethical principle of respect for a person's autonomy, public health workers have an obligation to respect privacy. Privacy relates to a person's right to be free from the attention of others. What a person regards as private is a personal choice, and it can change throughout one's life. For example, illicit drug use in youth may be something about which one boasts. Later in life, however, one might prefer that such information not be known to others.
When people agree to participate in research, they are expected to provide personal information, and researchers must commit to respecting and maintaining the confidentiality of their subjects. When people disclose private information for any public health purpose it is expected that the information will be held in confidence. Only with this trust can public health programs succeed.
Anonymity differs from confidentially, in that the name of a person is not known. However, where certain characteristics of a person are known, it could be possible for others to establish who the person is. For example, if it were said that a person of color's income exceeded a certain amount, and there is only one person of color being described in the community, then that person's privacy is no longer protected. The unauthorized disclosure of personal information provided in confidence would be deemed a breach of confidentiality. The public health system depends on the public's confidence and trust in the system's ability to maintain confidentiality.
Colin L. Soskolne
(see also: Codes of Conduct and Ethics Guidelines; Privacy; Record Linkage )
Mann, J. M.; Gouskins, S.; Grodin, M. A.; Annas, G. J., eds. (1999). Health and Human Rights: A Reader. New York and London: Routledge.