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PubMed2001

Anonymous predictive testing for Huntington's disease in the United States.

The widespread use of a predictive genetic test for Huntington's disease (HD) since 1993 has brought to the forefront issues regarding genetic privacy. Although the possibility of anonymous genetic testing has been discussed, its use in the United States has not been described previously. We review the experiences of 11 genetics specialists with anonymous predictive testing for HD. We found that more men than women requested anonymous testing, for reasons that more often related to personal privacy than to insurance or discrimination concerns. A number of approaches to anonymity were used, and genetics specialists varied in the degree to which they were comfortable with the process. A number of legal, medical, and practical questions are raised, which will require resolution if anonymous testing is to be performed with a greater frequency in the future.

Anonyms and Pseudonyms↗
PubMed2001

The proportion and characteristics of adolescents who return for anonymous HIV test results.

BACKGROUND: The proportion of adolescents who return for HIV test results varies widely, and knowledge of what characteristics affect their return is limited. GOAL: To quantify the proportion of adolescents who return for results of anonymous HIV tests, and to identify the characteristics that predict their return. STUDY DESIGN: This retrospective study evaluated 285 adolescents consenting to anonymous HIV tests in an urban clinic that provides medical services free of charge without eligibility requirements to a mostly working, uninsured population. RESULTS: Of the adolescents studied, 42% returned for test results. Three characteristics independently predicted their return: (1) coming to the clinic only for HIV testing, (2) having private health insurance, and (3) engaging in unprotected sex while using drugs or alcohol. CONCLUSIONS: Except for having unprotected sex while using drugs or alcohol, the characteristics that placed adolescents at risk for HIV infection did not predict their return for test results. Given the low return rate for anonymous testing in this setting, confidential testing, which permits follow-up evaluation of those failing to return for test results, should be considered.

AIDS Serodiagnosis↗
PubMed1999

Name-based surveillance and public health interventions for persons with HIV infection. Multistate Evaluation of Surveillance for HIV Study Group.

Name-based surveillance of HIV infection is the law in 31 U.S. states but remains controversial. This policy can be advocated solely to support surveillance of the epidemic, but a frequent argument is that it also provides a public health benefit by allowing follow-up of HIV-infected persons. These persons can then receive timely medical care and can be assisted with notifying sex and needle-sharing partners. Few comparative data are available to evaluate the outcomes of these interventions. In five states with name-based surveillance of HIV infection, the Multistate Evaluation of Surveillance for HIV Study Group surveyed a cross-sectional probability sample of persons with AIDS who tested positive for HIV before the date of their AIDS diagnosis. Health department follow-up of a reported HIV infection was not associated with more timely receipt of medical care after a positive HIV test result. Only 8.6% of persons who delayed medical care after their first positive HIV test result gave concern about being reported by name as a reason; no person gave it as the main reason. Persons who were tested anonymously and those who were tested confidentially did not differ in the mean number of sex and needle-sharing partners notified: Those tested anonymously reported personally notifying 3.85 sex and needle-sharing partners, and those tested confidentially reported notifying-personally and through the health department-3.80 partners. Many researchers and policymakers believe that name-based surveillance of HIV infection will have positive or negative effects on partner notification and access to health care. These results suggest that the potential for such effects has been exaggerated.

Anonymous Testing↗
PubMed1994

[Perception of anxiety in patients requesting anonymous HIV testing].

To determine the manifestations of anxiety in subjects seeking anonymous HIV testing and the aptitude of professionals to perceive it, we administered a semi-structured questionnaire to 481 persons, 281 before and 200 after instructing the practitioners to better decode anxiety during the consultation. The perception of anxiety by the care-givers was analyzed using the Covi scale. The results show that subjects requesting an HIV test often report stressful relational events. Their anxiety its often underestimated by the care-givers, and aptitude to recognise the patient's emotions can be improved. Prevention and quality of counselling depend on correct perception of the emotions which prompt the subject to request a test.

AIDS Serodiagnosis↗
PubMed2000

Monitoring of HIV-1 infection prevalence and trends in the general population using pregnant women as a sentinel population: 9 years experience from the Kagera region of Tanzania.

In the Kagera region of Tanzania, a population-based study was initiated in 1987 followed by the establishment of antenatal-clinic-based sentinel surveillance system in the town of Bukoba in 1990. Repeat studies in both populations in Bukoba in 1993 and 1996 made it possible to study the dynamics of HIV infection prevalence and incidence in the area. This study aims at comparing the findings from this sentinel surveillance system with those of cross-sectional studies in the general population to assess its validity in estimating HIV prevalence and their trends in the general population. A multistage cluster sampling technique was used in the population-based studies whereas the antenatal-clinic-based population was obtained by consecutively recruiting antenatal care attenders coming for the first time during a given pregnancy. Antibodies against HIV infection were tested using two independent enzyme-linked immunosorbent assay (ELISA) antibody detection tests. Unlinked anonymous testing strategy was adopted for the sentinel population. Age-adjusted prevalence among antenatal care attenders decreased from 22.4% (95% confidence interval [CI], 20.6-25.2) in 1990 to 16.1% (95% CI, 15.9-18.8) in 1993 and further to 13.7% (95% CI, 11.8-14.3) in 1996. These results closely resemble those of the general population of adult women in the clinic's catchment area (the town of Bukoba) where the age-adjusted prevalence of 29.1% (95% CI, 24.4-34.6) in 1987 showed a decrease in the studies in 1993 18.7% (95% CI, 15.1-23.0) and in 1996 14.9% (95% CI, 12.0-17.1). The study indicates that general population trend estimates can be generated using sentinel surveillance data based on pregnant women visiting an antenatal clinic for the first time during a given pregnancy. The benefits of using this group outweigh its limitations that are brought about by possible selection bias. Continued surveillance of the epidemic based on antenatal care patients as a sentinel population is therefore recommended.

Adolescent↗
PubMed1991

Prevalence of HIV infection in childbearing women in the United States. Surveillance using newborn blood samples.

A national, population-based survey was initiated in 1988 to measure the prevalence of human immunodeficiency virus (HIV) infection in women giving birth to infants in the United States. Following standardized procedures, residual dried-blood specimens collected on filter paper for newborn metabolic screening were tested anonymously in state public health laboratories for maternal antibody to HIV. As of September 1990, annual survey data were available from 38 states and the District of Columbia. The highest HIV seroprevalence rates were observed in New York (5.8 per 1000), the District of Columbia (5.5 per 1000), New Jersey (4.9 per 1000), and Florida (4.5 per 1000). Nationwide, an estimated 1.5 per 1000 women giving birth to infants in 1989 were infected with HIV. Assuming a perinatal transmission rate of 30%, we estimate that approximately 1800 newborns acquired HIV infection during one 12-month period. Preventing transmission of HIV infection to women and infants is an urgent public health priority.

Anonymous Testing↗
PubMed1998

Anonymous unlinked testing as a sentinel approach: experience in Germany.

STUDY OBJECTIVE: To establish a laboratory sentinel as a supplementary instrument for monitoring the seroprevalence of HIV among childbearing women as a proxy to the heterosexually active population. DESIGN/SETTING: Anonymous unlinked testing of neonatal dried blood spots has been performed in central laboratories of three federal states since 1993. The survey uses residual dried blood spots collected on Guthrie cards for screening of infants for metabolic disorders. These are eluted and tested for HIV antibodies. Data retained with the specimen are only district of residence along with year and month of birth. PARTICIPANTS: Because maternal IgG crosses the placenta before birth, the presence of antibodies in newborns reflects the infection status of the mother. Childbearing women are fairly representative for the heterosexually active general population. MAIN RESULTS: The observed HIV prevalence in childbearing women of less than 1 per thousand confirms the assumption of a low rate of HIV infection in the general population. Significant time trends could not be detected, but HIV prevalence was higher in metropolitan compared with rural areas. CONCLUSIONS: Laboratory sentinels in general and the anonymous unlinked testing of neonatal dried blood spots in particular can supply additional information on HIV seroprevalence. This surveillance system could be expanded to utilise residual samples of other sources as well as to monitor the immunity against specific vaccine preventable diseases and other infectious diseases of public health relevance.

Adolescent↗
PubMed1998

Sexual practices among men attending an anonymous HIV testing site in Singapore.

This study was undertaken to provide an empirical basis for planning safer sex interventions in Singapore by examining the sexual practices of men attending an anonymous HIV testing site. All male clients attending the testing site from January, 1996 to January 1997 were asked to complete an anonymous questionnaire concerning oral and anal sex with men as well as vaginal, oral and anal sex with women within the past year. Questionnaires were obtained from 251 male clients, ranging in age from 17 to 70 years (mean = 30.3). Of these 50.6% reported sex with women only, 39% with men only, 7.2% with both men and women and 3.2% with no one. Condom use was moderately high for anal and vaginal sex but low for oral sex. A risk index based on the riskiness of specific activities showed that bisexuals were the most likely to engage in high risk behaviour whereas homosexuals were the least likely. One factor in the greater riskiness of bisexuals' behaviour appeared to be a higher frequency of unprotected sex with women. These findings provide a preliminary portrait of sexual risk-taking among men in Singapore and suggest the need for continued emphasis on consistent condom use for penetrative sex as well as appropriate precautions for oral sex. The results also suggest the need to develop targeted interventions for bisexuals, particularly with respect to unprotected sex with women.

Adolescent↗
PubMed1991

Voluntary antenatal HIV testing--results of a pilot study.

Voluntary testing for antibody to human immunodeficiency virus (HIV) was offered to 4929 antenatal patients attending two hospitals in South Manchester during a 12 month period in 1989/90 in order to assess the feasibility of obtaining seroprevalence data by this method. Of these patients, 1728 (35%) agreed to a named test, 1396 (28%) to an unlinked anonymous test and the remaining 37% declined to be tested. The proportion of women tested increased from 22% to 88% over the period, and was similar in those with and without an identified risk factor for infection. One HIV antibody positive patient was found; she was tested anonymously and had no identified risk. The substantial cost in time and money required to establish the universal voluntary testing programme and the incomplete patient compliance confirm the importance of the unlinked anonymous surveys currently being established in the UK to monitor seroprevalence in sentinel populations.

AIDS Serodiagnosis↗
PubMed1997

Anonymous HIV testing using home collection and telemedicine counseling. A multicenter evaluation.

BACKGROUND: Home human immunodeficiency virus (HIV) testing has been proposed as an alternative to conventional HIV testing. Despite debate over HIV type 1 (HIV-1) home test systems, these concerns have not to our knowledge been previously studied. OBJECTIVE: To evaluate the safety and efficacy of the Home Access Health Corp (Hoffman Estates, Ill) HIV-1 test system compared with traditional HIV-1 testing with venous blood. METHODS: A total of 1255 subjects were studied prospectively in a blinded, subject-as-control evaluation at 9 outpatient clinics using intent-to-treat analysis. Subjects were provided a home collection kit (Home Access Health Corp) to collect their own finger-stick blood spot samples for laboratory analysis. Subjects received pretest counseling by telephone and their comprehension was subsequently assessed. Subject-collected blood spot samples were compared with professionally drawn blood spot samples for adequacy (sufficient for completing the Food and Drug Administration-endorsed testing) and with venous samples for accuracy. Subjects called 3 days later for anonymous results and posttest counseling. Device safety was evaluated based on adverse events incidence. Subject comprehension of HIV information was measured. RESULTS: Subject-collected blood spot sample results were in complete agreement with venous blood sample results, demonstrating 100% sensitivity and 100% specificity compared with venous controls. Ninety-eight percent of subjects obtained testable blood spot specimens compared with phlebotomists. Following pretest counseling, subjects answered 96% of HIV risk questions correctly. There were no significant adverse events. CONCLUSION: Anonymous HIV-1 home collection kits with pretest and posttest telephone counseling can provide a safe and effective alternative to conventional venous HIV-1 antibody testing.

Adult↗
PubMed1996

Anonymous HIV testing in the Canadian aboriginal population.

Reported numbers of acquired immunodeficiency syndrome cases among Canadian aboriginal peoples are currently relatively low. However, any increase in these numbers could have devastating human, social, and economic costs. Education and prevention of human immunodeficiency virus transmission are the most efficient and cost-effective measures available today. This paper discusses the role of anonymous HIV testing in effective HIV prevention in the Canadian aboriginal population.

Canada↗
PubMed1996

Attitudes to prenatal testing and notification for HIV infection in Nairobi, Kenya.

Four hundred antenatal clinic attendants were surveyed for their attitude to testing and notification for HIV infection test results. The participants were systematically sampled from the antenatal clinic at the Kenyatta National Hospital, Nairobi, and interviewed using a closed-ended structured questionnaire. All the attendants had heard of HIV, and only 5(1.3%) did not know how Acquired Immunodeficiency Syndrome (AIDS) presents. Fifty one percent of them had no objection to their blood being tested for HIV. In fact, 52.5% thought, wrongly, that blood was routinely tested for HIV at the hospital's antenatal clinic. More than one third (35.8%) of respondents wished their permission to be obtained before the testing and 95% wished to be informed of the test result. Acceptability of testing was 33.8%, for Named Voluntary Testing, 62.0% for Universal Testing and 1.0% for Anonymous Testing. All the women said they would want to use a method of contraception, principally tubal ligation, if found HIV seropositive and 63.7% would seek a termination of pregnancy. In this study population, acceptability and expressed willingness to know HIV test results and willingness to let a spouse/sexual partner know the result was high. This paper makes recommendations that HIV testing be made available at the ANC, together with competent pre and post-test counselling.

Adolescent↗
PubMed1997

Comparison of patients refusing with patients accepting unlinked anonymous HIV testing in an outpatient STD department in The Netherlands.

From 1 February 1993 to 1 February 1994 all new patients, known patients with new problems, and prostitutes attending the Outpatient Department of Sexually Transmitted Diseases (STD) of the University Hospital Rotterdam were asked to participate in unlinked anonymous human immunodeficiency virus (HIV) testing and to answer some questions. Data from the medical records of 300 patients refusing to participate were compared with self-reported data obtained from 2701 people accepting, to verify if the HIV seroprevalence among accepters could be representative for all STD department visitors. Men refusing were more often of foreign origin, had more often had more than one partner during the previous 6 months, more often attended the STD department for the first time, and more often had an STD diagnosed than men accepting. Women refusing were more often of foreign origin, had less often had more than one partner during the previous 6 months, and had more often used drugs intravenously than women accepting. Because most findings associated with refusing are also associated with being infected with HIV, the HIV seroprevalence among refusers is likely to be higher than among accepters. We therefore advise unlinked anonymous HIV testing of all patients visiting an STD department.

Adult↗
PubMed1993

[Utilization of anonymous HIV testing by the federal health office--developments and motives].

In the state-run health office in Ulm a survey of the frequency of anonymous HIV-antibody tests was taken between 1985 to 1991, of the age and gender representation from 1988 to 1991, of the test motives from 1.1.1990 to 1.3.1991. The result was a regressive trend following the test boom of 1987 and 1988, which is becoming more and more stable. The relation of men and women has been amounting to 6:4 in the last four years; the proportion of women receding slightly but constantly. The main motive of being tested was finding out about a high-risk or potentially high-risk sexual contact, mostly at the beginning of a new partnership. The motive ranking second in frequency was the investigation of the consequences of blood exposure, mostly relating to medical work. The third place was taken by irrational anxieties as a test motive. The article discusses the fact that test at the beginning of a new partnership frequently have the meaning of a sacrifice and a symbol of bondage in combination with a vow to be faithful. In case of irrational anxieties about AIDS the test-counsellor gets a chance to diagnose a possibly neurotic development at a very early stage, so that painful and expensive chronification and generalisation could be stopped or eased.

AIDS Serodiagnosis↗
PubMed1998

Early mortality of undiagnosed but prevalent (in 1983-1984) HIV infection in Lothian injectors who tested hepatitis B surface antigen positive (group A) or negative but were high risk for blood-borne virus transmission (group B) in 1983-1984.

OBJECTIVE: To estimate the early death-rate in HIV infected injectors whose HIV infection was during the injection-related HIV outbreak in Lothian region in Scotland in 1983-1984, which was coincident with Hepatitis B transmissions. SETTING: Regional Virus Laboratory in Edinburgh. SAMPLES: Sera from 1983-1984, originally received for Hepatitis B surface antigen testing, from individuals aged 15-55 years who were positive for Hepatitis B surface antigen in 1983-1984 (group A: census) or tested negative but were at high risk for blood-borne virus transmission according to their reason for testing (group B: 50% sample). METHODS: Survival status of individuals in groups A and B who had not been diagnosed with HIV disease by the end of December 1995 was checked against the deaths' records of the Registrar General for Scotland. Stored sera from 1983-1984 for patients who had died early (that is: in 1983-1984) were tested anonymously for HIV and Hepatitis C antibodies; and prior to testing, causes of death were scored by RPB according to the likelihood of their being HIV or drugs related. RESULTS: Three early deaths were found in group A patients who were not known to be HIV infected. None of the deaths was likely to be HIV-related; the sera were not tested in order not to risk deductive disclosure. Twenty-four early deaths were found in group B patients who were not known to be HIV-infected, five of whom were both HIV and Hepatitis C antibody positive, and one other was HIV antibody negative but Hepatitis C positive. Reclassification after unlinked anonymous testing and multiplying up of the group B results (to account for 50% sample) gave the early death rate (that is: in 1983-1986) as 15/155 (10%) for HIV-infected drug users (95% CI: 6%-13%). CONCLUSION: Injection-related outbreaks of HIV infection in Lothian in 1983-1984 and at Glenochil Prison in 1993 were each associated with substantial--estimated 10%--early death-rate in HIV-infected injectors. Both HIV outbreaks were coincident with Hepatitis B transmissions, which may be relevant. Further investigations of the death-rate within 2 years of HIV infection are warranted in other exposure categories than injection-related and for injectors who have been immunized against Hepatitis B.

Adolescent↗
PubMed1997

On-site, rapid HIV testing with same-day results and counseling.

BACKGROUND: New rapid HIV antibody tests have allowed provision of results and result-specific counseling on the day on initial visit, and have the potential to increase the efficiency of HIV counseling and testing. METHODS: To evaluate the use of rapid testing with same-day results in public clinics, the Single Use Diagnostic System HIV-1 rapid assay was used for a 3-month period at an anonymous testing clinic and a sexually transmitted disease (STD) clinic in Dallas, Texas. Non-reactive rapid test results were reported as HIV-negative. Reactive results were reported as 'preliminary positive'. These procedures were compared with standard testing during a baseline period, with respect to number of clients receiving results and post-test counseling, client satisfaction, counselor acceptance, cost and effectiveness at reducing HIV risk. RESULTS: Rapid testing resulted in an increase in the number of persons learning their serostatus: a 4% increase for uninfected and a 16% increase for infected clients at the Anonymous Testing Clinic; a 210% increase for uninfected patients and a 23% increase for infected patients at the STD clinic. Rapid testing resulted in a cost saving of US$ 11 per test in both the anonymous and STD clinics. Of those previously tested, 88% responded that they preferred the rapid test. In the year following initial HIV test, clients tested with rapid and standard procedures were equally likely to return to the clinic with a new STD (odds ratio, 0.97; 95% confidence interval, 0.7-1.4). CONCLUSIONS: Rapid, on-site HIV testing was feasible, preferred by clients, and, resulted in significant improvement in the number of persons learning their serostatus, without increasing the costs or decreasing the effectiveness of counseling and testing.

Counseling↗