![]() Breaches of privacy and confidentiality not only may affect a person’s dignity, but can cause harm. ![]() The bioethics principle nonmaleficence 3 requires safeguarding personal privacy. No security measure, however, can prevent invasion of privacy by those who have authority to access the record ( Gostin, 1995). When someone hacks into a computer system, there is a breach of security (and also potentially, a breach of confidentiality). Security helps keep health records safe from unauthorized use. Security can be defined as “the procedural and technical measures required (a) to prevent unauthorized access, modification, use, and dissemination of data stored or processed in a computer system, (b) to prevent any deliberate denial of service, and (c) to protect the system in its entirety from physical harm” ( Turn and Ware, 1976). ![]() Unauthorized or inadvertent disclosures of data gained as part of an intimate relationship are breaches of confidentiality ( Gostin and Hodge, 2002 NBAC, 2001). Confidentiality, for example, prevents physicians from disclosing information shared with them by a patient in the course of a physician–patient relationship. It addresses the issue of how to keep information exchanged in that relationship from being disclosed to third parties ( Westin, 1976). An important issue in privacy analysis is whether the individual has authorized particular uses of his or her personal information ( Westin, 1967).Ĭonfidentiality safeguards information that is gathered in the context of an intimate relationship. Privacy is concerned with the collection, storage, and use of personal information, and examines whether data can be collected in the first place, as well as the justifications, if any, under which data collected for one purpose can be used for another (secondary) 2 purpose. Privacy addresses the question of who has access to personal information and under what conditions. However, although privacy is often used interchangeably with the terms “confidentiality” and “security,” they have distinct meanings. In the context of personal information, concepts of privacy are closely intertwined with those of confidentiality and security. Our report, and the Privacy Rule itself, are concerned with health informational privacy. The concept of privacy is also context specific, and acquires a different meaning depending on the stated reasons for the information being gathered, the intentions of the parties involved, as well as the politics, convention and cultural expectations ( Nissenbaum, 2004 NRC, 2007b). In modern society, the term is used to denote different, but overlapping, concepts such as the right to bodily integrity or to be free from intrusive searches or surveillance. At its core, privacy is experienced on a personal level and often means different things to different people (reviewed by Lowrance, 1997 Pritts, 2008). The term “privacy” is used frequently, yet there is no universally accepted definition of the term, and confusion persists over the meaning, value, and scope of the concept of privacy. Privacy has deep historical roots (reviewed by Pritts, 2008 Westin, 1967), but because of its complexity, privacy has proven difficult to define and has been the subject of extensive, and often heated, debate by philosophers, sociologists, and legal scholars. The value and importance of health research will be addressed in Chapter 3. The intent of this chapter 1 is to define privacy and to delineate its importance to individuals and society as a whole. At the same time, health research can benefit individuals, for example, when it facilitates access to new therapies, improved diagnostics, and more effective ways to prevent illness and deliver care. But it is important to stress that privacy also has value at the societal level, because it permits complex activities, including research and public health activities to be carried out in ways that protect individuals’ dignity. ![]() In contrast, the primary justification for collecting personally identifiable health information for health research is to benefit society. The primary justification for protecting personal privacy is to protect the interests of individuals. Protecting patients involved in research from harm and preserving their rights is essential to ethical research. Health research is vital to improving human health and health care. Ethical health research and privacy protections both provide valuable benefits to society.
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