family communication about cancer genetic testing parent child perspectives n.
Skip this Video
Download Presentation
Family Communication About Cancer Genetic Testing: Parent-Child Perspectives

Loading in 2 Seconds...

play fullscreen
1 / 24

Family Communication About Cancer Genetic Testing: Parent-Child Perspectives - PowerPoint PPT Presentation

  • Uploaded on

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

I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
Download Presentation

PowerPoint Slideshow about 'Family Communication About Cancer Genetic Testing: Parent-Child Perspectives' - karan

Download Now An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.

- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript
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


N = 240

BRCA1/2 counseling/testing

M Age = 46, 81% Caucasian, 75% College

80% Married, 58% Survivor, 76% Proband


N = 124

M Age = 48, 83% Caucasian, 90% Biological


M Age = 13 (8-21), 53% Female

what parents say

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


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



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?



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



Teenagers, young adults

DTC testing

Education, counseling, support

Preventive tests offered to young, healthy people



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