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Limited attention has been given to what motivates and informs children and young people’s decision to participate (or not) in social research, especially about sensitive issues. This paper reports the findings from focus group interviews with children and young people aged 9–16 years, undertaken as part of a larger study that explored what constitutes a sensitive issue in social research and the factors considered when deciding to participate. Participants articulated a range of intrinsic and extrinsic motivations: benefiting others, getting something out of it, getting things ‘off your chest’ and the role of incentives and trusted adults. While similar to findings about medical research, the data from this study provides deeper insight into how children and young people make decisions to participate in social research. The critical role that accessible information plays in supporting children’s considered decision-making is highlighted, along with rich insights into why research might matter for themselves and others.

Limited attention has been given to what motivates and informs children and young people’s decision to participate (or not) in social research, especially about sensitive issues. This paper reports the findings from focus group interviews with children and young people aged 9–16 years, undertaken as part of a larger study that explored what constitutes a sensitive issue in social research and the factors considered when deciding to participate. Participants articulated a range of intrinsic and extrinsic motivations: benefiting others, getting something out of it, getting things ‘off your chest’ and the role of incentives and trusted adults. While similar to findings about medical research, the data from this study provides deeper insight into how children and young people make decisions to participate in social research. The critical role that accessible information plays in supporting children’s considered decision-making is highlighted, along with rich insights into why research might matter for themselves and others.

BACKGROUND: Risk-reducing salpingo-oophorectomy (RRSO) and ovarian cancer screening (OCS) are management options for women at increased risk of ovarian cancer. Long-term effects of these interventions on quality of life (QOL) are not well understood. METHODS: GOG-0199 is a prospective cohort study of women at increased ovarian cancer risk who chose either RRSO or OCS as their risk management intervention. At study entry, 6, 12, 24 and 60 months of follow-up, participants completed the QOL questionnaire, which included the Medical Outcome Study Short Form-36, the Impact of Events Scales, the Center for Epidemiological Studies Depression Scale, the State-Trait Anxiety Inventory, the Functional Assessment of Cancer Therapy - Endocrine Subscale, and the Sexual Activity Questionnaire. QOL measures were compared between the RRSO and OCS cohort at baseline and over time. RESULTS: Five-hundred-sixty-two participants in the RRSO cohort and 1,010 in the OCS completed the baseline and at least one follow-up questionnaire. At baseline, participants selecting RRSO reported lower health-related QOL (HRQOL), greater ovarian cancer-related stress, greater anxiety, and more depressive symptomatology, which improved during follow-up, especially for ovarian cancer-related stress. Screening was not found to adversely impact HRQOL. Hormone-related menopausal symptoms worsened and sexual functioning declined during follow-up in both cohorts, but more so among participants who underwent RRSO. CONCLUSIONS: HRQOL improved after surgery among women who chose RRSO and remained stable among participants undergoing screening. The adverse effects of RRSO and screening on short-term and long-term sexual activity and sexual functioning warrant consideration in the decision-making process for high-risk women.

Although there is general agreement about children’s engagement in social research, some researchers continue to experience challenges when seeking approval and support for children’s participation from a range of adult stakeholders, particularly when the research involves a sensitive topic. These challenges may reflect different perspectives, conflicting interests, needs or expectations. This paper explores factors that influence the decision-making of key stakeholder groups, including Human Research Ethics Committees, parents and organisational representatives. Building on the kind of objective, rational reasoning that underpins much ethical decision-making, the findings, from interviews with 42 participants across stakeholder groups, draw attention to influential issues grounded in perceptions of: the institution and researcher undertaking the research; the project itself; children’s characteristics and contexts. Collectively, such issues point to the critically important role of mutually respectful relationships between researchers and stakeholders as the basis for designing and implementing ethical research that gives close attention to stakeholder concerns.

Although there is general agreement about children’s engagement in social research, some researchers continue to experience challenges when seeking approval and support for children’s participation from a range of adult stakeholders, particularly when the research involves a sensitive topic. These challenges may reflect different perspectives, conflicting interests, needs or expectations. This paper explores factors that influence the decision-making of key stakeholder groups, including Human Research Ethics Committees, parents and organisational representatives. Building on the kind of objective, rational reasoning that underpins much ethical decision-making, the findings, from interviews with 42 participants across stakeholder groups, draw attention to influential issues grounded in perceptions of: the institution and researcher undertaking the research; the project itself; children’s characteristics and contexts. Collectively, such issues point to the critically important role of mutually respectful relationships between researchers and stakeholders as the basis for designing and implementing ethical research that gives close attention to stakeholder concerns.

While there is broad consensus that involving children in research is critically important for understanding their lives, there is considerable caution around their participation in social research on ‘sensitive’ issues. Such caution is further amplified by a lack of agreement about what constitutes a ‘sensitive topic’. This article draws on data from interviews with a range of Australian stakeholders, including children, parents, researchers, ethics committee members, government and non-government organisation representatives, and other decision-makers, specifically related to the question of ‘what is a sensitive topic?’. While participants identified a range of sensitive topics, findings point to sensitivities being closely linked with the contexts of children’s lives and experiences. This requires researchers to approach research in ways that reflect more nuanced understandings of these sensitivities, help address potential concerns and facilitate the development of research relationships that promote ethical conduct of research with children.

While there is broad consensus that involving children in research is critically important for understanding their lives, there is considerable caution around their participation in social research on ‘sensitive’ issues. Such caution is further amplified by a lack of agreement about what constitutes a ‘sensitive topic’. This article draws on data from interviews with a range of Australian stakeholders, including children, parents, researchers, ethics committee members, government and non-government organisation representatives, and other decision-makers, specifically related to the question of ‘what is a sensitive topic?’. While participants identified a range of sensitive topics, findings point to sensitivities being closely linked with the contexts of children’s lives and experiences. This requires researchers to approach research in ways that reflect more nuanced understandings of these sensitivities, help address potential concerns and facilitate the development of research relationships that promote ethical conduct of research with children.

We assessed mismatch repair by immunohistochemistry (IHC) and microsatellite instability (MSI) analysis in an early onset endometrial cancer and a sister's colon cancer. We demonstrated high-level MSI and normal expression for MLH1, MSH2 and MSH6. PMS2 failed to stain in both tumors, strongly implicating a PMS2 defect. This family did not meet clinical criteria for Lynch syndrome. However, early onset endometrial cancers in the proband and her sister, a metachronous colorectal cancer in the sister as well as MSI in endometrial and colonic tumors suggested a heritable mismatch repair defect. PCR-based direct exonic sequencing and multiplex ligation-dependent probe amplification (MLPA) were undertaken to search for PMS2 mutations in the germline DNA from the proband and her sister. No mutation was identified in the PMS2 gene. However, PMS2 exons 3, 4, 13, 14, 15 were not evaluated by MLPA and as such, rearrangements involving those exons cannot be excluded. Clinical testing for MLH1 and MSH2 mutation revealed a germline deletion of MLH1 exons 14 and 15. This MLH1 germline deletion leads to an immunodetectable stable C-terminal truncated MLH1 protein which based on the IHC staining must abrogate PMS2 stabilization. To the best of our knowledge, loss of PMS2 in MLH1 truncating mutation carriers that express MLH1 in their tumors has not been previously reported. This family points to a potential limitation of IHC-directed gene testing for suspected Lynch syndrome and the need to consider comprehensive MLH1 testing for individuals whose tumors lack PMS2 but for whom PMS2 mutations are not identified.

To compare the survival of women with uterine papillary serous carcinoma (UPSC) and clear cell carcinoma (CC) to those with grade 3 endometrioid uterine carcinoma (G3EC). Demographic, pathologic, treatment, and survival information were obtained from the Surveillance, Epidemiology, and End Results Program from 1988 to 2001. Data were analysed using Kaplan-Meier and Cox proportional hazards regression methods. Of 4180 women, 1473 had UPSC, 391 had CC, and 2316 had G3EC cancers. Uterine papillary serous carcinoma and CC patients were older (median age: 70 years and 68 vs 66 years, respectively; P<0.0001) and more likely to be black compared to G3EC (15 and 12% vs 7%; P<0.0001). A higher proportion of UPSC and CC patients had stage III-IV disease compared to G3EC patients (52 and 36% vs 29%; P<0.0001). Uterine papillary serous carcinoma, CC and G3EC patients represent 10, 3, and 15% of endometrial cancers but account for 39, 8, and 27% of cancer deaths, respectively. The 5-year disease-specific survivals for women with UPSC, CC and G3EC were 55, 68, and 77%, respectively (P<0.0001). The survival differences between UPSC, CC and G3EC persist after controlling for stage I-II (74, 82, and 86%; P<0.0001) and stage III-IV disease (33, 40, and 54; P<0.0001). On multivariate analysis, more favourable histology (G3EC), younger age, and earlier stage were independent predictors of improved survival. Women with UPSC and CC of the uterus have a significantly poorer prognosis compared to those with G3EC. These findings should be considered in the counselling, treating and designing of future trials for these high-risk patients.

To compare the survival of women with uterine papillary serous carcinoma (UPSC) and clear cell carcinoma (CC) to those with grade 3 endometrioid uterine carcinoma (G3EC). Demographic, pathologic, treatment, and survival information were obtained from the Surveillance, Epidemiology, and End Results Program from 1988 to 2001. Data were analysed using Kaplan-Meier and Cox proportional hazards regression methods. Of 4180 women, 1473 had UPSC, 391 had CC, and 2316 had G3EC cancers. Uterine papillary serous carcinoma and CC patients were older (median age: 70 years and 68 vs 66 years, respectively; P<0.0001) and more likely to be black compared to G3EC (15 and 12% vs 7%; P<0.0001). A higher proportion of UPSC and CC patients had stage III-IV disease compared to G3EC patients (52 and 36% vs 29%; P<0.0001). Uterine papillary serous carcinoma, CC and G3EC patients represent 10, 3, and 15% of endometrial cancers but account for 39, 8, and 27% of cancer deaths, respectively. The 5-year disease-specific survivals for women with UPSC, CC and G3EC were 55, 68, and 77%, respectively (P<0.0001). The survival differences between UPSC, CC and G3EC persist after controlling for stage I-II (74, 82, and 86%; P<0.0001) and stage III-IV disease (33, 40, and 54; P<0.0001). On multivariate analysis, more favourable histology (G3EC), younger age, and earlier stage were independent predictors of improved survival. Women with UPSC and CC of the uterus have a significantly poorer prognosis compared to those with G3EC. These findings should be considered in the counselling, treating and designing of future trials for these high-risk patients.