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OBJECTIVE: To determine the proportion of male and female research participants and rates of sex-based analysis and sex-specific reporting in published Australian clinical research. PARTICIPANTS AND METHODS: We assessed 400 clinical studies involving Australian-only participants, published in Journals between January 1, 2003, and May 31, 2006 (100 per year). Numbers of male and female participants in each study and presence or absence of analysis by sex (covariate adjustment, subgroup analysis, or sex-specific reporting) were recorded. Sex-specific studies were evaluated to determine whether the exclusion of one sex was biologically necessary. RESULTS: The total sample comprised 546,824 participants, of whom 73% were female; 36 studies were male-only, 78 were female-only. Of the participants in 286 studies that were not sex-specific, 56% were female. Of 114 sex-specific studies, the segregation by sex was deemed to be biologically necessary in 62%, ie, the research related directly to male or female biological function. More than one-quarter (28%) of studies with 30 participants or more published covariate adjustment or subgroup analysis by sex; 7% included sex-specific reporting of results. CONCLUSION: We found no routine exclusion of women; however, few publications analyzed results by sex. Some studies excluded women or men for apparently arbitrary reasons. Research performed with male-only participants differed in nature and size from that performed with female-only participants. These data indicate the need to track the sex of research participants. In addition, they provide the basis for assessing appropriate inclusion of men and women in research and for comparing any relationship between different international regulatory models and the rates of female participation in research. Mayo Clin Proc. 2008;83(5):536-542, Growing evidence indicates important differences between men and women in the incidence, treatment responses, and prognosis of a range of diseases, including arthritis, depression, heart disease, and tropical and infectious [...]

Young people born with variations in sex characteristics (VSC) or disorders of sex development (DSD) face numerous challenges in navigating issues relating to identity and to their lived and embodied experience. There is limited published research amplifying the voices of young people with a VSC, especially from Aotearoa/New Zealand. This qualitative study provides an up-to-date picture of the lived experience of 10 young people with a VSC in Aotearoa/New Zealand. The research was conducted in collaboration with the advocacy group, Intersex Youth Aotearoa, and explored the level of support provided by health services, peers and advocacy groups in relation to the ways the participants viewed themselves and their bodies, and their health related decision-making. Findings reveal the pressure on young people with a VSC to conform to cultural and societal norms, specifically, heteronormative and traditional constructs of how male and female bodies should look in Aotearoa/NZ society. Such views, often held and perpetuated by health professionals and parents, contributed to complexities surrounding identity, agency and acceptance of difference experienced by these young people. The implications of these findings are discussed, including the need for better psychological and peer support for young people. [ABSTRACT FROM AUTHOR]

Many clinical ethics support services do not involve patients. This is surprising because of the broad commitment to provide patient-centered healthcare. Clinical ethics support services are a component of the healthcare system and have an influence on patient care, and should therefore align with the regulatory and ethical requirements of patient-centered care, just process and cultural competence. First, in order to achieve good patient care, it is essential to involve patients in making their own healthcare decisions. Second, just ethical deliberation requires that the deliberating parties have access to complete, accurate and unbiased information – this is best achieved through direct patient input. These arguments are especially compelling in the case of non-dominant cultural and ethnic groups. Here, we argue that when a clinician refers a case to a clinical ethics support services for consideration, and that case involves a conflict between the views or values of the clinician and the patient, the patient is entitled to, at a minimum: (a) be informed of the referral; (b) have the opportunity to speak directly to the clinical ethics support services prior to deliberation; (c) be provided with any opinion directly from the clinical ethics support services; and (d) have the opportunity to speak to a clinical ethics support services member after the deliberation. We use New Zealand as a case study to support and extrapolate the ethical principles and the minimum patient involvement requirements. We draw on our empirical research with senior doctors at a tertiary New Zealand hospital. Clinicians in our study indicated that they would feel bound by clinical ethics support service advice and that the clinical ethics support service has a significant impact on patient care in the case it reviews. [ABSTRACT FROM AUTHOR]