Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives

Predictive testing is one of the new genetic technologies which, in conjunction with developing fields such as pharmacogenomics, promises many benefits for preventive and population health. Understanding how individuals appraise and make genetic test decisions is increasingly relevant as the technology expands. Lay understandings of genetic risk and test decision-making, located within holistic life frameworks including family or kin relationships, may vary considerably from clinical representations of these phenomena. The predictive test for Huntington's disease (HD), whilst specific to a single-gene, serious, mature-onset but currently untreatable disorder, is regarded as a model in this context. This paper reports upon a qualitative Australian study which investigated predictive test decision-making by individuals at risk for HD, the contexts of their decisions and the appraisals which underpinned them. In-depth interviews were conducted in Australia with 16 individuals at 50% risk for HD, with variation across testing decisions, gender, age and selected characteristics. Findings suggested predictive testing was regarded as a significant life decision with important implications for self and others, while the right not to know genetic status was staunchly and unanimously defended. Multiple contexts of reference were identified within which test decisions were located, including intra- and inter-personal frameworks, family history and experience of HID, and temporality. Participants used two main criteria in appraising test options: perceived value of, or need for the test information, for self and/or significant others, and degree to which such information could be tolerated and managed, short and long-term, by self and/or others. Selected moral and ethical considerations involved in decision-making are examined, as well as the clinical and socio-political contexts in which predictive testing is located. The paper argues that psychosocial vulnerabilities generated by the availability of testing technologies and exacerbated by policy imperatives towards individual responsibility and self-governance should be addressed at broader societal levels. (C) 2003 Elsevier Science Ltd. All rights reserved.

Choosing to have children or choosing to be childfree: Australian students' attitudes towards the decisions of heterosexual and lesbian women

Research has demonstrated that voluntarily childless heterosexual women, and lesbian women choosing to become mothers, are negatively stereotyped. However, there is little recent Australian research, and attitudes may have changed in line with changing family formation patterns. This study assessed young Australians' attitudes towards either a lesbian or a heterosexual woman who was planning, or not planning, to have children. One hundred and nineteen first year psychology students, and members of the general public, participated. The majority of participants were under 20, female, European Australian and single. Participants read a brief description of a woman who was variously described as having a male or a female partner, and as planning or not planning to have children. As expected, participants rated the heterosexual woman more favourably than the lesbian, and the woman wanting children more positively than the woman not wanting children. However, there was a trend for the lesbian woman planning to have children to be rated as happier, more mature and more individualistic than others. The legal and social implications associated with wanting to be a lesbian mother in Australia make motherhood a more difficult process for lesbian women than it does for heterosexual women, and may explain why lesbian women who have decided to take this difficult path are seen as happier and more mature, than women making more conventional life choices. While the predominantly young, female student sample limits the generality of the findings, they suggest that social attitudes towards female sexual orientation and women's childbirth decisions are changing.

Views from Hamburg : the Juno Trader case or how to make sense of the coastal State's rights in the light of its duty of prompt release

Special edition: The United Nations and international legal order - the case of the Juno Trader - on 18 December 2004, the International Tribunal for the Law of the Sea ordered the prompt release of a refrigerated cargo vessel and its cargo for fisheries violations in an exclusive economic zone - Tribunal unanimously decided that the vessel and cargo be released, upon posting of a bond in the form of a bank guarantee - crew should be free to leave without conditions - in this case, on prompt release, the Tribunal made valuable contributions to existing case law on the issue - shows that specialised tribunals may perform a decentralised application of the international rule of law - crystallises international fundamental standards of fairness and human rights.