Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.     

Slowing Down Time: An Exploration of Personal Life Extension Desirability as it Relates to Religiosity and Specific Religious Beliefs

As medical technology continues increasing the possibility of living a longer life, the public’s valuing of these developments must be considered. This study examines attitudes toward extending the human life span within a student population at a Christian university. Religious factors were hypothesized to affect life extension desirability. Scores on measures of willingness to defer to God’s will, meaning derived from religion, positive afterlife beliefs, and intrinsic religiosity were significantly and inversely related to life extension desirability. Implications of these findings are discussed, including encouraging medical practitioners to respect decision-making processes of religious persons who may find life extension interventions undesirable.     

Awareness and Preferences Regarding <Emphasis Type="Italic">BRCA1/2</Emphasis> Genetic Counseling and Testing Among Latinas and Non-Latina White Women at Increased Risk for Hereditary Breast and Ovarian Cancer

This study was an investigation of awareness, cognitions, and psychosocial and educational needs related to genetic counseling and testing among Latinas and non-Latina whites at increased risk for having a BRCA1/2 mutation. Sixty-three Latina and eighty-four non-Latina white women completed telephone surveys employing a mixture of quantitative and qualitative questions assessing awareness, benefits, risks, barriers, and genetic counseling communication preferences regarding BRCA1/2 testing. Among participants who had not previously had genetic counseling/testing, 56.9% of Latinas (29/51) and 34.8% of non-Latina white participants (24/69) were unaware of the availability of BRCA1/2 testing. In multivariate logistic regression analysis, Latina ethnicity was the only statistically significant independent factor associated with lack of awareness (OR = 0.42; 95% CI = 0.19–0.35). No appreciable differences were noted between ethnic groups regarding perceived benefits of BRCA1/2 testing or desired genetic counseling topics. These findings underscore the importance of increasing awareness of cancer genetic counseling and genetic testing among both Latina and non-Latina white populations.     

Graduate employment status and health: a longitudinal analysis of the transition from student

The prevalence of unemployment and underemployment was explored longitudinally in 248 recent graduates (73 males and 175 females) over an 18–24 month transition from final year student to 9–12 months post-graduation. Over this period changes in levels of psychological distress, health behaviours, social support, optimism and achievement motivation were measured. Results show that both unemployment and underemployment have deleterious effects on psychological and physical health, social support, optimism and achievement motivation.