Mark Stranger

THE AESTHETICS OF RISK: A Study of Surfing

A combination of participant-observation, survey research, interviews, and semiotics was used to examine risk-taking in Australian surfing. It is argued that: (1) aestheticization facilitates risk-taking in the pursuit of an ecstatic, transcendent experience; and (2) the surfing aesthetic involves a postmodern incarnation of the sublime that distorts rational risk assessment. The study also analyzes the role of the surfing media in constructing and reinforcing images of the sublime.

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.

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.

Surface and substructure: beneath surfing's commodified surface

This article discusses the important role that surfings own ‘culture industry’ plays in the internal dynamics of the surfing subculture and at the nexus between the subculture and mainstream society. It looks at the ‘Big Three’ surfing culture companies – Quiksilver, Billabong and Rip Curl – and their trajectory from grass-roots, cottage-industry businesses to global corporations. An alternative model to Marxs modern (economic) base and (social) superstructure is proposed; i.e., an (economic) surface and (social) substructure. This alternative model provides a useful framework for examining the dynamic between the postmodern surfing subculture and the economy (both its own and the mainstream economy). The model depicts a substructure consisting of surfings social formations and sectors, based upon shared foundational experience of transcendence– a sublime loss of self in the act of surfing. Surfings culture industry is shown to provide goods for insiders and present a commodified surface of symbolic tokens for mainstream consumers of surfing style, and in the very process act both as a bulwark against mainstream subsumption and an agent of postmodernization within the mainstream.

Capital, trust & consultation: Databanks and regulation in Australia

The new genetics ‘industry’ has emerged at a time of public ambivalence towards science, an ambivalence that could move to outright distrust when the commercial imperatives of increasingly market-oriented science gradually replace the more traditional imperative of ‘public good’. Genetics research and development is at the vanguard of the movement of science into the market economy and, as such, has come under intense public scrutiny. The political and social environment now demands public participation in the development of regulatory structures. Commercialization aims for rapid advances in research, leading to new genetic therapies and other public health benefits. However, this rapid progress has resulted in human tissue banks and genetic databases un(der)regulated in many countries, and challenges to accepted notions of privacy, ownership and consent. This paper presents an outline of the way Australia has embraced public participation in the development of a regulatory framework governing human genetic databanks. It argues that after a two-year, two-stage national inquiry into the protection of genetic information, the country now stands at a crossroads: it either addresses the recommendations of the inquiry—providing a model for the development of public trust in the human genetics industry, and in the state to regulate it, or continues to ignore the recommendations, fostering cynicism regarding the consultation process and an even greater level of distrust in the ability/willingness of the state to regulate the industry.

The use of legal remedies in Australia for pursuing allegations of genetic discrimination: Findings of an empirical study

Differential treatment on the basis of genetic status (genetic discrimination), has become an issue of international concern. The Genetic Discrimination Project (GDP) is an Australia-wide study which has empirically examined the nonmedical/health advantages and disadvantages for individuals who have gained specific information about their genetic status (typically through genetic testing). A major component of this project has been the Legal System Study which investigated and documented all cases involving allegations of genetic discrimination coming before anti-discrimination tribunals and other relevant bodies in Australia. Another major component of the project, the Consumer Study, investigated allegations of genetic discrimination from consumers of genetic tests. While the study identified a relatively small number of cases where allegations of genetic discrimination have been pursued under Australian anti-discrimination legislation, a key finding was the notable lack of uptake of legal remedies by those who may have experienced such discrimination. This paper explores possible factors contributing to this lack of uptake and makes recommendations to facilitate access to legal remedies by those who may have been subject to unlawful genetic discrimination.

Human genetic databanks in Australia: indications of inconsistency and confusion

This paper reports on a survey of human biotechnology organizations in Australia. The study provides insights into the nature, use and practices involved with human genetic databanking in the country. The survey was conducted at a time when databanks were becoming increasingly important to an expanding genomics industry, and while the nature and extent of industry regulation was being debated. The data revealed a surprising level of confusion and inconsistency in the interpretation of terminology and in ethical practice, even among those organizations subject to the relevant government ethics guidelines. It is argued that despite the extensive level of public consultation, recommendations for reform and actual reform in the intervening years, human genetic databanking remains an under-regulated sector of the human biotechnology industry in Australia, and at least as far as the private sector is concerned, will remain so in the foreseeable future.