Name-based reporting of HIV-positive test results as a deterrent to testing.
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OBJECTIVES: This study evaluated attitudes toward name-based reporting of HIV. METHODS: One hundred thirty high-risk, male repeat testers received information on the public health benefits of name-based reporting and reported their intentions to test. RESULTS: Of the 67 men who were randomly selected and asked their intentions before hearing the benefits, 63% said they would not test if reporting were required. After hearing the benefits, 19% changed their minds (P < .014). Of the 63 men who were asked only after hearing the benefits, 44% would not test. CONCLUSIONS: Implementing name-based reporting without working before-hand to change attitudes could undermine the benefits of both testing and HIV surveillance. (+info)
The ethics of anonymized HIV testing of pregnant women: a reappraisal.
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Seroprevalence monitoring of HIV in pregnant women by anonymized unlinked testing has been widely adopted in the UK and other countries. The scientific rationale is to eliminate participation and selection bias. The ethical justification is that the public good outweighs any harm to individuals. The assumption has been that individuals have had their autonomy respected by the offer of informed consent. In the light of new scientific evidence, it is doubtful that the public good is best served by the continuation of anonymously testing women receiving antenatal care. It is submitted that it is no longer ethical for health professionals to refrain from informing pregnant women of the benefits of voluntary named testing, or to request their consent to anonymized testing. The legal and moral concept of duty of care is examined, and the abrogation of this duty through anonymization is explained. (+info)
Comparison of deferral rates using a computerized versus written blood donor questionnaire: a randomized, cross-over study [ISRCTN84429599].
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BACKGROUND: Self-administered computer-assisted blood donor screening strategies may elicit more accurate responses and improve the screening process. METHODS: Randomized crossover trial comparing responses to questions on a computerized hand-held tool (HealthQuiz, or HQ), to responses on the standard written instrument (Donor Health Assessment Questionnaire, or DHAQ). Randomly selected donors at 133 blood donation clinics in the area of Hamilton, Canada participated from 1995 to 1996. Donors were randomized to complete either the HQ or the DHAQ first, followed by the other instrument. In addition to responses of 'yes' and 'no' on both questionnaires, the HQ provided a response option of 'not sure'. The primary outcome was the number of additional donors deferred by the HQ. RESULTS: A total of 1239 donors participated. Seventy-one potential donors were deferred as a result of responses to the questionnaires; 56.3% (40/71) were deferred by the DHAQ, and an additional 43.7% (31/71) were deferred due to risks identified by the HQ but not by the DHAQ. Fourteen donors self-deferred; 11 indicated on the HQ that they should not donate blood on that day but did not use the confidential self-exclusion option on the DHAQ, and three used the self-exclusion option on the DHAQ but did not indicate that they should not donate blood on the HQ. The HQ identified a blood contact or risk factor for HIV/AIDS or sexually transmitted infection that was not identified by the DHAQ in 0.1% to 2.7% of donors. CONCLUSION: A self-administered computerized questionnaire may increase risk reporting by blood donors. (+info)
Effects of anonymity, gender, and erotophilia on the quality of data obtained from self-reports of socially sensitive behaviors.
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This study examined the effects of anonymity, gender, and erotophilia on the quality of self-reports of socially sensitive health-related behaviors. A sample of 155 male and 203 female undergraduate students was randomly assigned to an anonymous and a confidential (i.e., nonanonymous) assessment condition. Gender, erotophilia, self-reports (of substance use, sexual behaviors, illegal activity), and perceived item threat were assessed by questionnaire. Data quality was strongly affected by experimental condition and gender. Thus, terminations were more frequent in the confidential condition and among women. In the confidential condition, women were significantly more likely to "prefer not to respond" to sensitive items compared to men. Both female gender and confidential condition were associated with lower frequency reports of sensitive health behaviors, and greater perceived threat of the assessment questions. Self-reported engagement in sensitive behaviors was positively related to both perceived question threat and erotophilia. Path analyses suggest that question threat mediates the effects of anonymity manipulations and gender on data quality (item refusal, termination), and that erotophilia mediates the effects of gender on incidence and frequency self-reports. The results indicate that anonymous assessments as well as male gender are associated with better data quality. (+info)
Stored human tissue: an ethical perspective on the fate of anonymous, archival material.
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The furore over the retention of organs at postmortem examination, without adequate consent, has led to a reassessment of the justification for, and circumstances surrounding, the retention of any human material after postmortem examinations and operations. This brings into focus the large amount of human material stored in various archives and museums, much of which is not identifiable and was accumulated many years ago, under unknown circumstances. Such anonymous archival material could be disposed of, used for teaching, used for research, or remain in storage. We argue that there are no ethical grounds for disposing of the material, or for storing it in the absence of a teaching or research rationale. Nevertheless, with stringent safeguards, it can be used even in the absence of consent in research and teaching. Regulations are required to control the storage of all such human material, along the lines of regulations governing anatomy body bequests. (+info)
Prevalence of HIV in workforces in southern Africa, 2000-2001.
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OBJECTIVES: Most data on HIV prevalence in low-risk populations in sub-Saharan Africa are drawn from sentinel surveys of pregnant women attending antenatal clinics and are not representative of formal sector workforces. We surveyed workforces in southern Africa to determine HIV prevalence among formally employed, largely male populations. METHODS: Voluntary, anonymous, unlinked seroprevalence surveys of 34 workforces with 44,000 employees were carried out in South Africa, Botswana, and Zambia in 2000-2001. Results were stratified to obtain estimates of prevalence by industrial sector, location, age, sex, and job level. RESULTS: Average HIV prevalence for the entire sample was 16.6% (95% CI: 16.3-17.0%). Country-wide prevalence was 14.5% (14.1-14.9%) in South Africa, 17.9% (17.1-18.7%) in Zambia, and 24.6% (23.6-25.7%) in Botswana. Among industrial sectors, mining (18.0%, 17.6-18.5%) and metal processing (17.3%, 15.9-18.7%) had the highest infection rates. Males, who comprised 85% of participants of known sex, were more likely (16.3%, 15.3-17.4%) to be infected than were females (10.7%, 8.7-12.7%). Contract (23%, 21.9-24.1%), unskilled (18.3%, 17.5-19.1%), and semi-skilled workers (18.7%, 18.1-19.4%) were much more likely to be infected than were skilled workers (10.5%, 9.5-11.4%) and managers (4.5%, 3.4-5.6%). Participation in the surveys averaged 63% of eligible employees. CONCLUSIONS: HIV prevalence among formally employed workers in southern Africa shows different patterns than among antenatal clinic attendees. Anonymous workplace surveys generate prevalence estimates for demographic groups that are not represented in antenatal surveys and can strengthen support for prevention and treatment interventions. (+info)
Precise definition of anonymization in genetic polymorphism studies.
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Anonymization is an essential tool to protect privacy of participants in epidemiological studies. This paper classifies types of anonymization in genetic polymorphism studies, providing precise definitions. They are: 1) unlinkable anonymization at enrollment without a participant list; 2) unlinkable anonymization before genotyping with a participant list; 3) linkable anonymization; 4) unlinkable anonymization for outsiders; and 5) linkable anonymization for outsiders. The classification in view of accessibility to a table including genotype data with directly identifiable data such as names is important; if such tables exist, staff may obtain genotype information about participants. The first three modes are defined here as anonymization unaccessible to genotype data with directly identifiable information for research staff. Anonymization with a key code held by participants is possible with any of the above anonymization modes, by which participants can access to their own genotypes through telephone or internet. A guideline issued on March 29, 2001 with collaboration of three Ministries in Japan defines "anonymization in a linkable fashion" and "anonymization in an unlinkable fashion", "for the purpose of preventing the personal information from being divulged externally in violation of law, the present guidelines or a research protocol", but the contents are not clear in practice. The proposed definitions will be useful when we describe and discuss the preferable mode of anonymization for a given polymorphism study. (+info)
Ethics and ethics committees: HIV serosurveillance in Scotland.
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Knowledge of the heterosexual spread of HIV is needed to plan future health-care needs. In December 1989 we gained approval and finance for unlinked anonymous testing of neonatal Guthrie card samples in Scotland. Local ethics committee approval was required before testing could start. Twenty ethics committees were approached in the 15 Scottish health board areas. Nineteen of the committees have agreed, representing 99.6 per cent of births in Scotland. Our method of contacting ethics committees is discussed, as are the points raised. (+info)