Wednesday, July 29 • 8:00am - 12:00pm
16: Cancer Control and Predictive Genetic Testing Among Youth (Half-Day Workshop, AM)

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Cancer Control and Predictive Genetic Testing Among Youth:The Ethical, Legal and Social Issues (ELSI), and Health Promotive Opportunities

Speakers: Angela Bradbury MD, Dava Szalda MD, Linda Patrick-Miller PhD and Lisa A. Schwartz PhD

With advances in cancer predisposition genetics and cancer treatment, and better understanding of familial and genetic risk, the number of youth with identified risk for future cancer is increasing. It is known that familial patterns of cancer and/or genetic susceptibility confer risk to offspring. In addition, cancer survivors are at higher risk of secondary malignant neoplasms as a result of the carcinogenic treatment to cure their first cancer, or an underlying genetic predisposition. At the same time, there is increasing evidence that adolescence is a key period of carcinogenic vulnerability that health behaviors might alter. Furthermore guidelines suggest screening should be tailored to individual risk. As such, there is a need for health care professionals to understand the current state of the science and policy with regards to cancer control and genetic testing in order to help families and youth understand and navigate their cancer risk.

The workshop will use breast cancer risk as our primary example. Young women with genetic predisposition, known family history of breast cancer, and history of previous malignancy are at higher risk for developing breast cancer in adulthood. Long-term surveillance is less than optimal for young adults at high risk, which is likely attributable to many psychosocial and systems factors. Although current U.S. guidelines recommend delaying testing for adult onset cancers, e.g. BRCA1/2 mutations, until adulthood, there has been ongoing debate over the associated ethical, legal and social issues (ELSI) in BRCA1/2 families. There are many challenges and questions related to how best to communicate, manage and counsel these patients and families during the transition to adulthood prior to the onset of regular surveillance with breast imaging. Furthermore, there is growing evidence of risk and protective factors, many of which are controllable, related to future breast cancer risk that can be addressed in adolescence. Thus, breast cancer is an exemplar cancer with which to highlight the nuances and challenges of facilitating and providing appropriate risk-based care and surveillance.

Using breast cancer as our primary example, we will provide an overview of the current state of the science related to cancer susceptibility, including genetic testing, with particular emphasis on implications for youth. Topics of discussion will include: 1) US guidelines and policy and how they might differ from other international standards and practices, 2) ethical, legal and social (ELSI) Issues, 3) counseling on health promotion, genetic testing, and surveillance; 4) appropriate referrals for multidisciplinary care 5) communication with parents, patients, and adult providers, 6) and related issues when transferring adolescent and young adult patients to adult care. The workshop will combine didactics, review of cases, and small and large group discussion. The workshop leaders represent clinical and research expertise in pediatric and medical oncology, adolescent medicine, pediatric and adult clinical health psychology, medical ethics, and cancer control and health promotion.

  • Describe current state of the science related to cancer susceptibility and control among youth using breast cancer as an example.
  • Describe the ethical legal and social issues (ELSI) related to genetic testing in minors.
  • Describe current US guidelines and practices related to genetic testing and breast cancer prevention among adolescents and young adults and potential for international differences.
  • Describe approaches to anticipatory guidance and counseling about cancer risk and cancer control for adolescents and young adults.

Wednesday July 29, 2015 8:00am - 12:00pm
Capitol Hill Meeting Level 3

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