S Taylor

The Pharmacy Diabetes Care Program: assessment of a community pharmacy diabetes service model in Australia

Aim  To assess the impact of a community pharmacy diabetes service model on patient outcomes in Type 2 diabetes.

Investigating genetic discrimination in Australia: a large‐scale survey of clinical genetics clients

We report first results from the Australian Genetic Discrimination Project of clinical genetics services clients’ perceptions and experiences regarding alleged differential treatment associated with having genetic information. Adults (n = 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated mature‐onset conditions were surveyed; 951/1185 respondents met inclusion criteria for current asymptomatic status. Neurological conditions and familial cancers were primary relevant conditions for 87% of asymptomatic respondents. Specific incidents of alleged negative treatment, reported by 10% (n = 93) of respondents, occurred in life insurance (42%), employment (5%), family (22%), social (11%) and health (20%) domains. Respondents where neuro‐degenerative conditions were relevant were more likely overall to report incidents and significantly more likely to report incidents in the social domain. Most incidents in the post‐test period occurred in the first year after testing. Only 15% of respondents knew where to complain officially if treated negatively because of genetics issues. Recommendations include the need for increased community and clinical education regarding genetic discrimination, for extended clinical genetics sector engagement and for co‐ordinated monitoring, research and policy development at national levels in order for the full benefits of genetic testing technology to be realised.

Genetic discrimination: international perspectives.

Genetic discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the concept of GD and its contextual features, reviews research evidence regarding peoples experiences of GD and the impact of GD within a range of domains, and provides an overview of legal and policy responses to GD that have emerged globally. We argue that GD is a significant and internationally established phenomenon that requires multilevel responses to ensure social justice and equitable outcomes for all citizens. Future research should monitor GD and its impacts within the community as well as institutions and should evaluate the effectiveness of legislative, policy, community education, and systemic responses.

Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis.

Objective:This exploratory, pilot study aimed to investigate motivations and reflections of participants who had provided epidemiological information, blood samples and access to clinical records and data in a large genetic epidemiological study of endometriosis, a common multifactorial disorder affecting women. We also aimed to explore understanding of complex genetic or multifactorial conditions in general. Methods:In-depth interviews were conducted with 16 endometriosis study participants with diverse characteristics. Results:Interviewees generally described their participation in the genetic study using altruistic frameworks of reference. Themes that emerged included unquestioning willingness and consent to participate, little concern about privacy issues, desire for more information from the researchers about the condition rather than scientific progress, the benefits of research participation to family communication, and differing ideas about genetic influences on endometriosis. Specific features of endometriosis also influenced reflections on research participation experience. Conclusions:As increasing numbers of individuals and families in the community become involved in genetic epidemiological studies of common diseases, more extensive research will be needed to better understand their expectations with a view to improving researchers’ communications with study participants.

How White is Social Work in Australia

Abstract How White is social work in Australia? This paper analyses this question, focusing on social work practice and education. In asking the question, the aim is to open space for debate about how the social work profession in Australia should progress practice with Indigenous people and issues. The paper combines Bourdieus concept of the habitus with “Whiteness” theory to argue that the profession is socially, economically, culturally, and geographically separated from Indigenous people and that the consequences for how social workers engage with their Indigenous clients have yet to be fully explored. Decentring Whiteness requires recognition of epistemological and ontological assumptions so deeply embedded that they are invisible to those who carry them. This invisibility permits White privilege to exist unacknowledged and unchallenged within societal formations. In shifting the focus away from the “Other” to the “non Other”, an examination of Whiteness asks social workers to examine their own racial location and the role of White privilege in their lives. It requires us to go beyond intellectual commitments to antiracism and antioppression, and to make racial issues personal as well as political.

Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing

Purpose: To undertake a systematic process of verification of consumer accounts of alleged genetic discrimination.Methods: Verification of incidents reported in life insurance and other contexts that met the criteria of genetic discrimination, and the impact of fear of such treatment, was determined, with consent, through interview, document analysis and where appropriate, direct contact with the third party involved. The process comprised obtaining evidence that the alleged incident was accurately reported and determining whether the decision or action seemed to be justifiable and/or ethical.Results: Reported incidents of genetic discrimination were verified in life insurance access, underwriting and coercion (9), applications for workers compensation (1) and early release from prison (1) and in two cases of fear of discrimination impacting on access to genetic testing. Relevant conditions were inherited cancer susceptibility (8), Huntington disease (3), hereditary hemochromatosis (1), and polycystic kidney disease (1). In two cases, the reversal of an adverse underwriting decision to standard rate after intervention with insurers by genetics health professionals was verified. The mismatch between consumer and third party accounts in three life insurance incidents involved miscommunication or lack of information provision by financial advisers.Conclusion: These first cases of verified genetic discrimination make it essential for policies and guidelines to be developed and implemented to ensure appropriate use of genetic test results in insurance underwriting, to promote education and training in the financial industry, and to provide support for consumers and health professionals undertaking challenges of adverse decisions.

Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study

Genetic discrimination—defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history)—is an important concern to patients, healthcare professionals, lawmakers, and family members at risk for carrying a deleterious gene. Data from the United States, Canada, and Australia were collected from 433 individuals at risk for Huntington disease (HD) who have tested either positive or negative for the gene that causes HD and family members of affected individuals who have a 50% risk for developing the disorder but remain untested. Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation. We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined. The incidence of self‐reported discrimination is less than the overall worry about the risk of discrimination, which is more prevalent in each domain. Despite a relatively low rate of perceived genetic discrimination in the areas of health insurance and employment, compared to the perception of discrimination and stigma in personal relationships, the cumulative burden of genetic discrimination across all domains of experience represents a challenge to those at risk for HD. The effect of this cumulative burden on daily life decisions remains unknown.

Investigating genetic discrimination in Australia: opportunities and challenges in the early stages

Genetic discrimination, defined as the differential treatment of individuals or their relatives on the basis of actual or presumed genetic differences, is an emerging issue of interest in academic, clinical, social and legal contexts. While its potential significance has been discussed widely, verified empirical data are scarce. Genetic discrimination is a complex phenomenon to describe and investigate, as evidenced by the recent Australian Law Reform Commission inquiry in Australia. The authors research project, which commenced in 2002, aims to document the multiple perspectives and experiences regarding genetic discrimination in Australia and inform future policy development and law reform. Data are being collected from consumers, employers, insurers and the legal system. Attempted verification of alleged accounts of genetic discrimination will be a novel feature of the research. This paper overviews the early stages of the research, including conceptual challenges and their methodological implications.

Methodological Considerations in the Study of Genetic Discrimination

The potential significance and dimensions of genetic discrimination have been described extensively in published literature, but epidemiological and verified case data are limited. Obtaining unbiased data from individuals about discrimination which has been based on erroneous or unjustifiable assumptions about their genetic predispositions poses unique challenges. Through review and discussion of research literature, we identify methodological considerations for collecting valid epidemiological data on genetic discrimination from individuals in the community; in particular, we consider issues which relate to sampling, selection and response. We identify issues to promote sound study design, with particular attention to verification of genetic discrimination, and highlight the importance of clinical and genetic knowledge of complex genotype-phenotype relationships.

In Their Own Words: Reports of Stigma and Genetic Discrimination by People at Risk for Huntington Disease in the International RESPOND-HD Study

Genetic discrimination may be experienced in the day‐to‐day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At‐risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at‐risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND‐HD (I‐RESPOND‐HD) survey. One of the studys purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.