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Describes Myriad Genetics and its struggle to develop a genetic testing service while facing challenges from competitors and activist organizations. After Myriad's discovery of the BRCA gene, capable of genetic testing for breast cancer in women, Myriad needed to choose a strategy to provide this service to the public. With several major competitors offering similar services, intense media scrutiny, and a charged activist and political climate, a poor Myriad decision could have major repercussions.

Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.

Community-based HIV testing and counselling (HTC) has been recommended for improving access to prevention, care, and treatment services in at-risk populations. Earlier systematic reviews and meta-analyses have been undertaken, but due to some methodological limitations, their findings do not yet provide a practical significance. The purpose of this paper is to re-examine the recent evidence of the efficacy of community-based HTC approaches on the uptake of HTC in at-risk populations.

The database of PubMed online, Science Direct, the Lancet Global Health, the Cochrane Central Register of Controlled Trials, and Google Scholar were systematically searched using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to obtain empirical papers published between March 2013 and December 2015.

Of 600 collected papers, there were 6 cluster randomized trials papers which met the inclusion criteria. Compared to the health facilities-based HTC, community-based HTC approaches have been shown to improve the uptake of HIV testing from 5.8 to 37 per cent, and improve HIV testing in men and their partners together from 6.8 to 34 per cent. The community approaches also detected lower HIV-positive cases (0.29 per cent as compared to 4 per cent), improved access to treatment services from 0.3 to 25 per cent, demonstrated higher cluster differentiation 4 count in newly diagnosed patients (median of 400-438 cells/µl), and increased the rate of first-time HIV testing from 9 to 11.8 per cent. With respect to social and behavioural outcomes, community-based HTC increased social norms for HIV testing by 6 per cent (95 per cent CI 3-9), decreased multiple sex partners by 55 per cent (95 per cent CI 42-73), lowered casual sex by 45 per cent (95 per cent CI 33-62), increased knowledge about HIV (83.2 vs 28.9 per cent), improved positive attitudes towards HIV patients (73.0 vs 34.3 per cent), and increased the use of condoms (28.0 vs 12.3 per cent).

Community-based HTC combined with behavioural interventions have been found to be more effective in increasing the uptake of HIV testing as well as other outcomes as compared to the conventional health facilities-based testing and counselling approaches.

Examines the impact of genetic testing and therapy on health care in light of the development of the system in the USA since the turn of the twentieth century. Genetic testing and therapy have the potential to create a great advance in health care but also to become a business of multi‐billion dollar proportions. If present trends of investment and long‐range plans mature, health care will be adversely affected in terms of its distribution, access and economy. Developed and sold as commodities in a free‐market economy, genetic advances will economically stress health care and fail to meet the ethical and legal standards demanded by voluntary informed consent and counseling. Without abandonment of the marketplace approach to health care and thorough reform, many will find themselves excluded from the benefits and vulnerable to discrimination.

Poses the question: does psychometric testing have a role within counselling? States that many advocate the true face of counselling as humanistic, which poses a problem for the use of psychometric tests. States that in a counsellor’s first meeting with a client, some form of assessment or evaluation takes place in order to inform the counsellor of the severity of the client’s problem. Briefly details various early tests, and continues by focusing on the Beck Hopelessness Scale (BHS) and Rust Inventory of Schizotypal Cognitions (RISC). Describes both scales: applies their uses in clinical settings; outlines behavioural and psychodynamic uses of these tests; illustrates effectiveness through a number of case studies and vignettes. Concludes that it is up to the individual counsellors how they choose to conduct a counselling sessions, or whether they use such psychometric tests.

At least 20% of individuals living with HIV pass through prison and jail doors every year, in any nation, worldwide. Therefore, interventions that improve access to HIV testing, HIV care, and education can have a broad impact on public health in every country. The benefits of these interventions in correctional settings have already been well documented. For example, improved access to HIV testing, treatment by an HIV specialist, preventive vaccinations and prophylactic medications, screening for concomitant infections such as HCV, and pre‐release planning services have been shown to decrease HIV‐related mortality and morbidity, to reduce the risk of HIV transmission and to decrease recidivism. Education of at‐risk individuals has also been shown to reduce HIV risk behaviors. Safe distribution of condoms and needle‐exchange programs have also been demonstrated to be safe and effective, although few such programs have been implemented in the United States. While all the available evidence has demonstrated that these public health‐oriented interventions can be and are successful in correctional settings, implementation on a national and international level lags far behind the evidence. The time has come to take an evidence‐based approach to improving HIV management in correctional settings. Implementations of the HIV management interventions described in this article make good medical sense and will have a positive impact on the health of inmates and the communities to which inmates return.

This article analyses and discusses spatial conditions contributing to confidentiality in HIV healthcare facilities carried out by two non-governmental organisations in Uganda, the AIDS Information Centre (AIC) and The AIDS Support Organisation (TASO). The provision of confidential space was found to be the most important architectural quality promoting client wellbeing, where Voluntary Counselling and Testing (VCT) as well as ongoing services to people living with HIV are provided. The study shows that confidential space is a requirement in a number of situations: when the client approaches the health centre; during the visit; and in the meeting between client, counsellor and medical staff. An unobtrusive location of the centre and separate, private counselling rooms are thus the most favourable spatial conditions.

This article is based on a qualitative, explorative case study carried out in Jinja, Uganda during four months in 2004. Direct observation, interviews, primarily with clients and staff, spatial analyses and a qualitative content analysis were carried out.

A significant subset of patients (12 per cent) with triple negative breast cancer (TNBC) is BRCA mutation carriers, which can be identified through genetic testing. The purpose of this paper is to evaluate the referral practice for TNBC patients with reference to New South Wales (NSW) referral guidelines at the time of diagnosis and to assess the effectiveness of such guidelines in identifying BRCA mutations. Robust health governance requires monitoring of adherence to evidence-based guidelines such as those that underpin referral for cancer genetic testing in this clinical scenario.

The authors conducted a retrospective clinical audit of identified TNBC patients at St Vincent’s Hospital (SVH) between 2006 and 2016 in NSW, comparing referral practice to guidelines extant at the time of diagnosis. Family history was considered for age guideline-inappropriate referrals to SVH while the results of BRCA gene testing were assessed for all referred.

Overall, of the 17 patients eligible for referral based on the age criterion, 10 (58.5 per cent) were referred appropriately; however, there were substantial improvements from 2012 with 100 per cent referred. Of note, 12 (33.4 per cent) of 36 patients referred to SVH were referred outside of guidelines, pointing to other reasons for referral, such as patient age (OR 0.945; 95% CI 0.914–0.978) and calendar year (OR: 1.332; 95% CI: 1.127–1.575) at TNBC diagnosis. Referral guidelines captured 66.67 per cent of identified deleterious BRCA mutations in those tested.

Substantial under-referral of guideline-eligible patients was identified, with evidence-based guidelines effective in identifying high-risk individuals for BRCA mutation testing. There was, however, a substantial proportion of guideline-inappropriate referrals.

This paper examines the implications of the disability rights critique of prenatal testing on the development of genetic policy and abortion rights. It traces the reappearance of the disabled body in public deliberations over reproductive and genetic politics that use disability to frame arguments about which bodies are worthy of protection, how and why we limit reproductive choices, and what reasons women may use to terminate their pregnancies. The disability critique of prenatal testing and selective abortion finds itself in productive tension with reproductive rights politics, which increasingly features disability in both pro-life and pro-choice messages. The uneasy alliance between disability and pro-life interests has profound implications for both disability legal scholarship and the sociolegal inquiry into the role of rights articulation – and rejection – by social movements.

The rates of HIV infection among prisoners in most countries are significantly higher than in the general population. HCV seroprevalence rates are even higher. While most prisoners living with HIV or AIDS and/or HCV contract their infection(s) outside the institutions before imprisonment, there is evidence that the risk of being infected in prison, in particular through sharing of contaminated injecting equipment and through unprotected sex, is great. Outbreaks of HIV infection have been documented in a number of countries. Since the early 1990s, various countries have introduced HIV and, to a lesser extent, HCV prevention programmes in prisons. Part 2 of the select annotated bibliography on HIV/AIDS and HCV in prisons contains selected “essential” articles and reports that provide information about (1) prevalence of HIV, HCV, and risk behaviours in prisons; (2) transmission of HIV and HCV in prisons; and (3) measures aimed at preventing HIV and HCV infection in prisons: education, voluntary testing and counselling, provision of condoms, prevention of rape, sexual violence and coercion and bleach and needle and syringe programmes. Each section also contains a brief review of the evidence, based on recent work undertaken by WHO.