![]() ![]() Rothfeder believes that such pervasive data acquisition and exchange can lead to a feeling of powerlessness in the face of privacy intrusion. of regional databanks as well as to numerous information resellers across the country. ![]() And from these databases it's broadcast to thousands. databases owned by the credit bureaus, the government, banks, insurance companies, direct marketing companies, and other interested corporations. Information about every move we make-buying a car or a home, applying for a loan, taking out insurance, purchasing potato chips, requesting a government grant, getting turned down for credit, going to work, seeing a doctor-is fed into. He also claims that such information is moved from one computer to another about five times a day (pp. Rothfeder (1992) asserts that about five billion records in the United States describe each resident's whereabouts and other personal information. Many privacy experts have described the ready availability of personal information (e.g., see Piller, 1993). Sixty-eight percent agreed strongly or very strongly that "computers are an actual threat to personal privacy," and almost 90 percent agreed that computers have made it much easier to obtain confidential personal information improperly (Equifax, 1992). There was agreement by 80 percent of respondents that "consumers have lost all control over how personal information about them is circulated and used by companies." The 1992 survey also asked about the effect of computers on privacy. 1 This response has remained stable since 1990 when it rose sharply from a figure of 64 percent cited for 1978. A 1993 Louis Harris poll found that 79 percent of the American public is "very" (49 percent) or "somewhat" (30 percent) worried about the threat to personal privacy (Harris/Equifax, 1993). The emergence of HDOs in the 1990s comes at a time when the American public is expressing growing concern about threats to personal privacy. The warnings implicit in the commissioners' statement are even more pertinent today. as records continue to supplant face-to-face encounters in our society, there has been no compensating tendency to give the individual the kind of control over the collection, use, and disclosure of information about him that his face-to-face encounters normally entail. Each of his countless transactions with them leaves its mark in the records they maintain about him. In its landmark 1977 report, Personal Privacy in an Information Society (PPSC, 1977a), the commissioners noted that:Įvery member of a modern society acts out the major events and transitions of his life with organizations as attentive partners. The Privacy Protection Study Commission (PPSC) was created by the Privacy Act of 1974 to investigate the personal data recordkeeping practices of governmental, regional, and private organizations. HISTORICAL PERSPECTIVES AND GENERAL OBSERVATIONS ON DISCLOSURE OF INFORMATION The recommendations at the end of this chapter are intended to strengthen current protections for confidentiality and privacy of health-related data, particularly for information acquired by HDOs. It pays particular attention to the status that might be accorded such data when held by HDOs.Įxisting ethical, legal, and other approaches to protecting confidentiality and privacy of personal health data offer some safeguards, but major gaps and limitations remain. It defines privacy, confidentiality, and security in the context of health-related information and outlines the concerns that health experts, legal authorities, information technology specialists, and society at large have about erosions in the protections accorded such information. ![]() This chapter examines issues related to information about individuals or patients-specifically, what this committee refers to as person-identified or person-identifiable data. Earlier chapters introduced the Institute of Medicine (IOM) committee's conceptualization of health database organizations (HDOs), outlined their presumed benefits, listed potential users and uses, and examined issues related to the disclosure of descriptive and evaluative data on health care providers (institutions, agencies, practitioners, and similar entities). ![]()
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