Family Communication About Cancer Genetic Testing: Parent-Child Perspectives

1. Family Communication AboutCancer Genetic Testing:Parent-Child Perspectives Kenneth P. Tercyak, PhD Departments of Oncology and Pediatrics Lombardi Comprehensive Cancer Center Georgetown University Medical Center

2. Cancer Prevalence >10 million Americans surviving with cancer >1.4 million new cases expected All cancer is genetic Only small fraction are hereditary “Hereditary” or “familial” cancers include some forms of breast, ovarian, colorectal Source: American Cancer Society

3. Familial Breast Cancer Most common type among women (1:8 lifetime) 5%-10% of all female breast/ovarian cancers are hereditary BRCA1/BRCA2 gene alterations Genetic counseling and testing Source: American Cancer Society

4. Decisions & Outcomes Counseling, testing, results receipt? Screening (mammography, CBE, MRI) Chemoprevention (tamoxifen?) Prophylactic surgery (mastectomy, oophorectomy) Disclosure to potentially at-risk relatives Source: American Cancer Society

5. How Often Do Parents DiscloseGenetic Test Results To TheirMinor-Age Children? Why (not)? When? How? What consequence?

6. Children (Minors) ASCO recommends that the decision to offer testing to potentially affected children should take into account the availability of evidence-based risk-reduction strategies and the probability of developing a malignancy during childhood. Where risk-reduction strategies are available or cancer predominantly develops in childhood, ASCO believes that the scope of parental authority encompasses the right to decide for or against testing. In the absence of increased risk of a childhood malignancy, ASCO recommends delaying genetic testing until an individual is of sufficient age to make an informed decision regarding such tests. As in other areas of pediatric care, the clinical cancer genetics professional should be an advocate for the best interests of the child. Source: American Society of Clinical Oncology

7. Parent Communication Study Disclosure to children? Factors influencing disclosure? Attitudes toward testing children? Process, outcomes of disclosure? Decision support?

8. Parent Communication Study Mothers N = 240 BRCA1/2 counseling/testing M Age = 46, 81% Caucasian, 75% College 80% Married, 58% Survivor, 76% Proband Fathers N = 124 M Age = 48, 83% Caucasian, 90% Biological Children M Age = 13 (8-21), 53% Female

9. Disclosure x Test Result

10. Disclosure xMaternal Characteristics

11. Disclosure x Child Age

12. Disclosure x Child Gender

13. DISCLOSURE The child’s right to know Responsibility to tell the child That the result was good news (i.e., negative test result) Prevent child worry Promote greater trust/open communication NONDISCLOSURE Child is too young to hear the information Child is too immature to understand the information Child would become worried or anxious if he/she knew Child is not interested Test result alone does not warrant discussion What Parents Say

14. Attitudes & Beliefs Peshkin et al., in press, J. Pediatr. Psychol. *t = 3.29, p = .0014

15. DM & Communication Peshkin et al., in press, J. Pediatr. Psychol. *t = 1. 91, p = .05

16. Disclosure Process & Outcomes Mothers > fathers Gauge children’s readiness Medical information OK, need communication steps Selective disclosure is rare Conversations are spontaneous, factual Maternal health/well-being > significance for child

17. Disclosure Process & Outcomes Teenage daughters of carriers Discussion of child health Disclosure ≠ cancer worry Exception = ‘vulnerable children’ Values-based decision Test results = content; ≠ determinant

18. Themes Autonomy - Whose information is it to tell? Beneficence - Who benefits, and how? Paternalism - What does “maturity” mean, when who is ready? Proxy Rights - “I know my child” Fairness - Challenges of differing age children Consequences - What is “normal” reaction? Parent Guilt - What role does it play? Secrecy - Who can children talk to about this?

19. Decision Support Given that practice guidelines encourage open family communication about genetic testing… How can we support parental decision making? What roles, rights, and responsibilities are held by parents, children (especially adolescents), and providers? What is the role of research to inform these decisions and outcomes?

22. Summary Majority of mothers disclose BRCA1/2 test results to children (>70% of adolescents) Age, (test result), values/preferences determinants of disclosure (Vocal) minority of parents favor pediatric BRCA1/2 testing, majority support parental autonomy Disclosure is initiated by mothers, tends to happen quickly, mostly factual, emphasis on ‘knowing your child’ and without guidance

23. Implications Teenagers, young adults DTC testing Education, counseling, support Preventive tests offered to young, healthy people

24. Acknowledgments ELSI Research Program (1R01HG002686, 2R01HG002686) Judy Garber, MD, MPH Andrea Patenaude, PhD Beth Peshkin, MS, CGC Marc Schwartz, PhD Heiddis Valdimarsdottir, PhD Tiffani DeMarco, MS Andrea Forman, MS, CGC Rachel Nusbaum, MS, CGC Katherine Schneider, MPH, CGC