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.
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 and
Procedures, 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.
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