Totems and taboos: an Apache tribe has signed a historic deal with geneticists.
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Many centrally based cancer protocols have begun to address the ethical issues concerning tissue banking for genetic research. A multidisciplinary subcommittee of the Madigan Army Medical Center Institutional Review Board was established to determine the scope of the problem and offer a concise, user-friendly policy with guidelines on how to control and monitor the use of stored tissue for future genetic and molecular research. Our institution participates in 69 Southern Oncology Group or National Surgical Adjuvant Breast and Bowel Project protocols and 47 Children's Oncology Group protocols. Of these protocols, 22 of 69 and 36 of 47, respectively, asked for tissue to be stored for future biologic study. Only 4 of 69 and 3 of 47, respectively, deal with specific consent for future genetic/biologic research. The multidisciplinary committee developed a policy that dealt with the following areas: exempt status, waived consent, informed consent, deceased status, family studies, and information flow. An algorithm was created to establish a system of checks and balances concerning privacy, protection and an appeals process.
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In order to determine the frequency of HIV seropositivity of sera from patients attending our hospital emergency department (ED) we used a HIV screening system based on the use of pooled sera. To determine the reliability of this marker we collect all ED serum samples during two different intervals of a week. From 577 sera analyzed by this method we detected 1.38% of HIV positive samples (95% confidence interval from 0.43% to 2.33%) with 74% benefit on reactives. We did not find significative differences between the rates of HIV seropositivity in the two period of analyzing (1.6% in October 1990 vs 1.2% in February 1991). The consistency of this method for anonymous HIV testing could be applied to a large number of samples from cohorts of expected low HIV prevalence rates and indirectly using this marker to control the spreading of HIV in a given population.
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.
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.
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Sexually transmitted infections (STIs) declined in the UK during the 1980s and early 1990s but have increased substantially since 1995. Within the overall increase there are important differences in the epidemiology of these infections. The current, aggregate system of STI data collection in the UK provides limited demographic information and is unable to fully explain these differences. More useful information can be obtained using an enhanced surveillance system that collects disaggregate, anonymised, individual patient data including ethnic group and truncated postcode of residence. Such a system has been set up in the West Midlands NHS region. The methodology of the project is described here along with the findings to date. These findings confirm that the burden of STIs disproportionately affects young persons, men who have sex with men, black ethnic minority groups and those living in urban areas. Identifying the groups at greatest risk in this way enables interventions to be more usefully targeted.