Driving toward guiding principles: a goal for privacy, confidentiality, and security of health information.
As health care moves from paper to electronic data collection, providing easier access and dissemination of health information, the development of guiding privacy, confidentiality, and security principles is necessary to help balance the protection of patients' privacy interests against appropriate information access. A comparative review and analysis was done, based on a compilation of privacy, confidentiality, and security principles from many sources. Principles derived from ten identified sources were compared with each of the compiled principles to assess support level, uniformity, and inconsistencies. Of 28 compiled principles, 23 were supported by at least 50 percent of the sources. Technology could address at least 12 of the principles. Notable consistencies among the principles could provide a basis for consensus for further legislative and organizational work. It is imperative that all participants in our health care system work actively toward a viable resolution of this information privacy debate. (+info)
Confidentiality and HIV status in Kwazulu-Natal, South Africa: implications, resistances and challenges.
This article provides a contextualized comparison and analysis of the former Kwazulu and the new Kwazulu-Natal policy documents on HIV confidentiality, the differing practices within the region, and their implications for support and gender. It is based on interviews with key players in the regional NACOSA (National AIDS Convention of South Africa), and participation in meetings between August and November 1995. The main division is between those influenced by other rural African models, especially the Zambian concept of "shared confidentiality' as a way of ensuring support, and who have gone on to develop more community-based practices to destigmatize the disease, in contrast with the stronger emphasis in the new document on individual rights, assuming a more urban constituency, and where "shared confidentiality' is much more circumscribed. One of the difficulties of the new policy in which "confidentiality' is interpreted as "secrecy', is that it would seem to foreclose and neutralize lay and community support, as distinct from the earlier and unacknowledged policy of former Kwazulu. It also seeks to provide an enhanced role for professional counsellors. This psychologizing of the infection and the distancing from "community', and from women's groups, is surprising in a country in whose townships "community' remains a powerful motivating symbol, and where NGOs and peer groups have been identified everywhere as central to effective HIV/AIDS related prevention, care and support for behavior change. (+info)
To tell the truth: disclosing the incentives and limits of managed care.
As managed care becomes more prevalent in the United States, concerns have arisen over the business practices of managed care companies. A particular concern is whether patients should be made aware of the financial incentives and treatment limits of their healthcare plan. At present, managed care organizations are not legally required to make such disclosures. However, such disclosures would be advisable for reasons of ethical fidelity, contractual clarity, and practical prudence. Physicians themselves may also have a fiduciary responsibility to discuss incentives and limits with their patients. Once the decision to disclose has been made, the managed care organization must draft a document that explains, clearly and honestly, limits of care in the plan and physician incentives that might restrict the care a patient receives. (+info)
Physicians' perceptions of managed care.
We wished to determine physicians' views and knowledge of managed care, particularly their beliefs about the provisions of managed care contracts in terms of legality and ethics. A questionnaire was sent to the 315 physicians of the medical staff of Norwalk Hospital in Connecticut regarding managed care and managed care contracts. Sixty-six responses were received within a 45-day period (20.9% return). Although only 1 of 11 contract provisions presented in one section of the questionnaire was illegal in Connecticut, a majority of physicians believed 7 of the 11 were illegal. On average, 50% of physicians polled thought each of the provisions was illegal, and a varying majority of physicians (53% to 95.4%) felt the various provisions were unethical. The majority of respondents (84.8% to 92.4%) believed that nondisclosure provisions were unethical. Ninety-seven percent thought managed care interferes with quality of care, and 72.7% of physicians felt that the managed care industry should be held legally responsible for ensuring quality of care. However, 92.4% of physicians considered themselves to be ethically responsible for ensuring quality of care. Physicians have a poor understanding of the legal aspects of managed care contracts but feel strongly that many provisions of these contracts are unethical. Physicians also believe that managed care is causing medicine to be practiced in a manner that is contrary to patients' interests and that legal recourse is needed to prevent this. (+info)
Is recruitment more difficult with a placebo arm in randomised controlled trials? A quasirandomised, interview based study.
OBJECTIVE: To investigate whether including a placebo arm in a clinical trial of hormone replacement therapy influenced women's stated willingness to participate. DESIGN: Quasirandomised, interview based study. SETTING: 10 group practices in the Medical Research Council's General Practice Research Framework. PARTICIPANTS: 436 postmenopausal women aged 45-64 who had not had a hysterectomy. MAIN OUTCOME MEASURES: Stated willingness to enter a trial and reasons for the decisions made. RESULTS: Of 218 women told about the trial without a placebo arm, 85 (39%) indicated their willingness to enter compared with 65 (30%) of the 218 women told about the trial with the placebo arm (P=0.06). Part of this difference was due to explicit reluctance to take a placebo. Altruism and personal benefit were the reasons most frequently given for wanting to take part in a trial. The reasons most frequently cited for not wanting to take part were reluctance to restart periods, not wanting to take unknown or unnecessary tablets, or not wanting to interfere with present good health. CONCLUSION: For preventive trials the inclusion of a placebo arm may reduce patients' willingness to participate. (+info)
The basis of informed consent for BMT patients.
During recent decades the doctrine of informed consent has become a standard part of medical care as an expression of patients' rights to self-determination. In situations when only one treatment alternative exists for a potential cure, the extent of a patient's self-determination is constrained. Our hypothesis is that for patients considering a life-saving procedure such as bone marrow transplant (BMT), informed consent has little meaning as a basis for their right to self-determination. A longitudinal study of BMT patients was undertaken with four self-administered questionnaires. Questions centered around expectations, knowledge, anxiety and factors contributing to their decision to undergo treatment. Although the informed consent process made patients more knowledgeable about the treatment, their decision to consent was largely based on positive outcome expectations and on trust in the physician. Informed consent relieved their anxieties and increased their hopes for survival. Our conclusion was that the greatest value of the informed consent process lay in meeting the patients' emotional rather than cognitive needs. When their survival is at stake and BMT represents their only option, the patient's vulnerability puts a moral responsibility on the physician to respect the principle of beneficence while not sacrificing the patient's right to self-determination. (+info)
Genetic privacy: orthodoxy or oxymoron?
In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (+info)
Genetics and the British insurance industry.
Genetics and genetic testing raise key issues for insurance and employment. Governmental and public concern galvanised the British insurance industry into developing a code of practice. The history of the development of the code, issues of genetic discrimination, access to medical information, consent and the dangers of withholding information and the impact on the equity of pooled risk are explored. Proactive steps by the Association of British Insurers suggest that moral reflection not legislation is the way forward. (+info)