An inevitable logical starting-point is the hallowed medical privacy tradition dating back at least as far as Hippocrates—but one doesn't have to be cynical to surmise that even Dr. H's own receptionist may have gossiped about patients' foibles and maladies.... The precept of nondisclosure is an ideal. But it has been, and should still be, centr
Privacy is a deeply felt but elusive concept. Everyone is sensitive to having his privacy violated. The concepts of "personal matters" and "intimate knowledge" are familiar, as is the notion that individuals live in a "private sphere" over which they are to be granted autonomy. The right to private life was proclaimed in the Universal Declaration
Several important legislative events are focusing attention on the issues.
At issue right now—as health care is rapidly becoming industrialized, collectivized, and computerized—is to what extent society will preserve the cherished tradition of patient–healthcare provider confidentiality with its many implications, and the related relationships of trust with those who perform health research. Also at issue is whet
Versions of an omnibus "Medical Records Confidentiality Act" are being considered by the U.S. Congress, as is a "Genetic Confidentiality and Discrimination Act." Some States are revising their medical-privacy laws covering information on mental health, HIV–AIDS status, or genetics. All of these will have implications for research.
A new "Health Insurance Portability and Accountability Act," which became law in August 1996, established several provisions relating to confidentiality of medical records as they are handled in health insurance, billing and payment data, and the like. How these are worked out will have implications for how data are accessed and processed in healt
Personally identifiable health-research data are exchanged internationally every day, by governments, pharmaceutical firms, and others, and this will inevitably increase. Data on Americans are transferred, and American-based institutions do much transferring. Uniform international standards for protecting privacy, confidentiality, and security urg
The Report identifies many problem areas. The following are four large groups of issues that, while not entirely new, are growing rapidly in scale and complexity, and must urgently be attended to: Secondary uses of data, and data linking Research on private-sector health data Cybersecurity Genetic privacy. Issue cluster: Secondary res
The following principles are recommended for organizations that conduct, sponsor, or regulate health research involving personally identifiable data. They can be transposed into professional guidelines, standard operating principles, regulations, or laws. Criteria and procedures should be established that are specific to the context.
The Federal Common Rule and other laws and regulations require many protections for human subjects of research. The main social instruments are informed consent of the data- subject, and Institutional Review Board (IRB) supervision. Both of these mechanisms have served society well. But both now need to be renewed.
In September 1996 the U.S. Secretary of Health and Human Services, Dr. Donna E. Shalala, requested this study as background for policy decisions that her Department and American society, along with their counterparts in other countries, urgently must confront. The study was conducted by Dr. William W. Lowrance, an external consultant, who for ad
Directive 95/ /EC of the European Parliament and of the Council of the European Union. Chapter II. General Rules on the Lawfulness of the Processing of Personal Data
Article 5 Member States shall, within the limits of the provisions of this Chapter, determine more precisely the conditions under which the processing of personal data is lawful. SECTION 1 PRINCIPLES RELATING TO DATA QUALITY Article 6 1. Member States shall provide that personal data must be: (a) processed fairly and lawfully;
European Union Restreint ECO 291 CODEC 92 Common Position (EC) No /95 Adopted by the Council on 20 February 1995 With a View to Adopting Directive 94/ /EC of the European Parliament and of the Council on the Protection of Individuals With Regard to the Processing of Personal Data And on the Free Movement of Such Data On the
How We Will Accomplish Our Objective We will provide financial and technical assistance to a variety of community prevention services. Our priorities include: comprehensive state programs for the prevention of sexually transmitted diseases (STDs).
State Nursing Home Quality Improvement Programs: Site Visit and Synthesis Report. Description of Quality Improvement Programs in Iowa
This section includes a brief description of each of Iowa's quality improvement programs followed by a discussion of program funding, governance and the management and staffing structure. The following quality improvement programs were reviewed:
State Nursing Home Quality Improvement Programs: Site Visit and Synthesis Report. Aspects of Florida's Quality Improvement Programs Noted to be Less Successful
Although some discussion participants praised the Quality Monitoring program, consumer advocates voiced some concerns, primarily because of the changes that were made to the original role and responsibilities as laid out in HB 1971 in 1999. The program as initially enacted was seen as separate from the survey agency and allowed the monitors to foc
Personal Privacy in an Information Society. Elements of an Expectation of Confidentiality. Prohibiting Voluntary Disclosure
In several areas of its inquiry, the Commission attempted to identify records about an individual kept by third parties in which it believes the individual should have a legitimate expectation of confidentiality-a right to expect that such records or the information in them would not ordinarily be disclosed without his consent.
If records about individuals held by third-party record keepers are to be protected against government access, the law must change. In light of the inability of the courts to refashion the application of Constitutional theory, the change must come through legislative action. VOLUNTARY DISCLOSURE AND COMPULSORY PROCESS
1 1975 data conveyed to staff of the Privacy Protection Study Commission by staff at the National Center for Health Statistics. 2 National Center for Health Statistics, Health: United States 1975, (Rockville, Maryland: Department of Health, Education, and Welfare, 1975), p. 3. 3 Section 5(c)(2)A) of the Privacy Act of 1974 authorized the
The Commission considered several ways in which its medical-record recommendations might be implemented and enforced. The alternatives considered ranged from a wholly voluntary approach to Federal legislation which, like the 1974 Drug Abuse and Alcoholism statutes, 49 would make compliance with the recommendations a requirement attached to the di