Any information that a person chooses to keep to himself or herself is considered "private" information. A person's right to privacy is protected under Article 12 of the United Nations (UN) Universal Declaration of Human Rights (1948): "No one shall be subjected to arbitrary interference with his privacy, family, home, or correspondence, nor to attacks upon his honor and reputation. Everyone has the right to the protection of the law against such interference or attacks." 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 authorization, and to a person's right to be free from the attention of others. Under the ethical principle of respect for a person's autonomy, public health workers have an obligation to respect privacy. What a person regards as private is a personal choice, and it can change throughout one's life. When people disclose private information for any public health purpose, it is expected that the information will be held in the strictest confidence. Only with this trust can public health programs succeed. One's right to privacy may, however, be superseded by legal requirements, particularly in matters pertaining to the welfare of vulnerable members of society (e.g., children) and where illegal drugs are concerned. Laws governing privacy and its limits also change over time and reflect a society's changing values.
Confidentiality and privacy are related, but distinct concepts. Privacy is a right, while confidentiality is an obligation one has to respect another's privacy. When we grant others access to ourselves, we necessarily give up some measure of privacy. However, we still retain a right over the dissemination of information in the contractual situation of informed consent. Informed consent is provided when securing a person's participation in research, or in relation to the physician-patient relationship. An infringement of confidentiality occurs when a person to whom information deemed private was disclosed in confidence fails to protect that information, or allows others access to it.
To protect privacy, agencies that compile health statistics are required to aggregate information when they tabulate subcategories of data to avoid any possible disclosure that could be inferred from small numbers of people having particular characteristics. In the context of screening people for markers of exposure to infection, researchers and practitioners have the obligation to consider the potential stigma associated with information that flows from such screening tests.
For example, in the case of HIV (human immunodeficiency virus) there is no evidence to suggest that the virus is spread through casual contact. Therefore, there is no overwhelming need for society to know a person's HIV antibody status. When government agencies implement screening programs for HIV, however, the possibility of the test results being made known could cause consternation to both the public and to individuals who test positive. Public health officials thus may implement screening programs by offering anonymous testing as a way of protecting the individual's right to privacy. There is a drawback to this, however, because the information cannot be linked to the person's record for research purposes. Nevertheless, any compulsory screening program should be done anonymously, thus avoiding any potential breach of privacy.
A voluntary screening program could be offered either anonymously or not. Generally, however, in the interest of public health, access to information is given priority over an individual's right to privacy, though it is important to give full and rational consideration to the modes of transmission and other characteristics of the pathogen of concern.
COLIN L. SOSKOLNE
LEE E. SIESWERDA
Beachamp, T. L., and Childress, J. F. (1994). Principles of Biomedical Ethics, 4th edition. New York: Oxford University Press.
Mann, J. M.; Gruskin, S.; Grodin, M. A.; and Annas, G. J., eds. (1999). Health and Human Rights: A Reader. New York: Routledge.