Controversies in Communication of Genetic Risk for Hereditary Breast Cancer

n Abstract: Increased availability and heightened consumer awareness of ''cancer genes'' has increased consumer interest in, and demand for breast cancer risk assessment, and thus a pressing need for providers to identify effective, efficient methods of communicating complicated genetic information to consumers and their potentially at-risk relatives. With increasing direct-to-consumer and -physician marketing of predictive genetic tests, there has been considerable growth in web-and telephone-based genetic services. There is urgent need to further evaluate the psychosocial and behavioral outcomes (i.e., risks and benefits) of telephone and web-based methods of delivery before they become fully incorporated into clinical care models. Given the implications of genetic test results for family members, and the inherent conflicts in health care providers' dual responsibilities to protect patient privacy and to ''warn'' those at-risk, new models for communicating risk to at-risk relatives are emerging. Additional controversies arise when the at-risk relative is a minor. Research evaluating the impact of communicating genetic risk to offspring is necessary to inform optimal communication of genetic risk for breast cancer across the lifespan. Better understanding the risks and benefits associated with each of these controversial areas in cancer risk communication are crucial to optimizing adherence to recommended breast cancer risk management strategies and ensuring psycho-social well-being in the clinical delivery of genetic services for breast cancer susceptibility. n T he discovery of the role of BRCA1/2 mutations in the development of hereditary breast and ovarian cancer, and the development of a clinical test for the identification of those mutations holds great promise for reducing the risk of hereditary breast and ovarian cancer. Although professional societies have provided recommendations for pre-and post-test counseling by health care practitioners with specialized genetics training, there are aspects of genetic testing for hereditary cancer that remain controversial. Increased availability and heightened consumer awareness of ''cancer genes'' has increased consumer interest in, and demand for hereditary cancer risk assessment, and thus, a pressing need for providers to identify effective, efficient methods of communicating complicated genetic information to consumers and their potentially at-risk relatives. Optimal outcomes of communication of genetic test results include adherence to recommended risk management strategies and maximization of psycho-social well-being. This requires not only the effective communication of risk information, but also an understanding of the consumers' translation of that information into personalized perceptions of risk of disease, benefits of interventions and the bio-psychosocial factors that mediate that process. Other concerns include the transfer of genetic risk information to atrisk relatives, including providers' obligation regarding ''duty to warn'' at-risk relatives. When the at-risk relative is a minor, additional controversies arise regarding the timing of disclosure of familial risk, and the appropriateness of minors' testing for adult-onset hereditary cancers. These concerns remain the subjects of ongoing debate and necessitate further empiric research to inform evidence-based guidelines. PROVIDER COMMUNICATION OF GENETIC RISK INFORMATION TO PATIENTS Effective counseling of patients undergoing BRCA1/2 genetic testing includes risk communication, informed consent, and psychosocial support (1-7)

Transforming knowledge systems for life on Earth: Visions of future systems and how to get there

Formalised knowledge systems, including universities and research institutes, are important for contemporary societies. They are, however, also arguably failing humanity when their impact is measured against the level of progress being made in stimulating the societal changes needed to address challenges like climate change. In this research we used a novel futures-oriented and participatory approach that asked what future envisioned knowledge systems might need to look like and how we might get there. Findings suggest that envisioned future systems will need to be much more collaborative, open, diverse, egalitarian, and able to work with values and systemic issues. They will also need to go beyond producing knowledge about our world to generating wisdom about how to act within it. To get to envisioned systems we will need to rapidly scale methodological innovations, connect innovators, and creatively accelerate learning about working with intractable challenges. We will also need to create new funding schemes, a global knowledge commons, and challenge deeply held assumptions. To genuinely be a creative force in supporting longevity of human and non-human life on our planet, the shift in knowledge systems will probably need to be at the scale of the enlightenment and speed of the scientific and technological revolution accompanying the second World War. This will require bold and strategic action from governments, scientists, civic society and sustained transformational intent