Family communication about cancer genetic testing parent child perspectives
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Family Communication About Cancer Genetic Testing: Parent-Child Perspectives. Kenneth P. Tercyak, PhD. Departments of Oncology and Pediatrics Lombardi Comprehensive Cancer Center Georgetown University Medical Center. Cancer Prevalence. >10 million Americans surviving with cancer

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Family Communication About Cancer Genetic Testing: Parent-Child Perspectives

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Family communication about cancer genetic testing parent child perspectives

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


Cancer prevalence

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


Familial breast cancer

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


Decisions outcomes

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


How often do parents disclose genetic test results to their minor age children

How Often Do Parents DiscloseGenetic Test Results To TheirMinor-Age Children?

Why (not)?

When? How?

What consequence?


Children minors

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


Parent communication study

Parent Communication Study

Disclosure to children?

Factors influencing disclosure?

Attitudes toward testing children?

Process, outcomes of disclosure?

Decision support?


Parent communication study1

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


Disclosure x test result

Disclosure x Test Result


Disclosure x maternal characteristics

Disclosure xMaternal Characteristics


Disclosure x child age

Disclosure x Child Age


Disclosure x child gender

Disclosure x Child Gender


What parents say

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


Attitudes beliefs

Attitudes & Beliefs

Peshkin et al., in press, J. Pediatr. Psychol.

*t = 3.29, p = .0014


Dm communication

DM & Communication

Peshkin et al., in press, J. Pediatr. Psychol.

*t = 1. 91, p = .05


Disclosure process outcomes

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


Disclosure process outcomes1

Disclosure Process & Outcomes

Teenage daughters of carriers

Discussion of child health

Disclosure ≠ cancer worry

Exception = ‘vulnerable children’

Values-based decision

Test results = content; ≠ determinant


Themes

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?


Decision support

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?


Summary

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


Implications

Implications

Teenagers, young adults

DTC testing

Education, counseling, support

Preventive tests offered to young, healthy people


Acknowledgments

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


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