Most Parents Share Genetic Testing Results with Offspring

Newswise — If you undergo genetic testing, would you share the results with your children? New research by a group that includes an investigator at The Cancer Institute of New Jersey (CINJ) indicates a majority would. The study, presented this week at the 45th Annual Meeting of the American Society of Clinical Oncology in Orlando, looks at how parents perceive their child's reaction to news of a positive or negative genetic test result. CINJ is a Center of Excellence of UMDNJ-Robert Wood Johnson Medical School.

Testing for a mutation in the BRCA1 or BRCA2 genes (which can place women at a higher risk for both breast and ovarian cancers) was completed on 163 parents. Out of that number, 66 percent reported disclosing positive or negative results to at least one of their children, some as young as five years old. Parents were most likely to share the outcome if they did not have a mutation, if they were found to have cancer, or if their children were older. Of parents who did test positive for a BRCA1 or BRCA2 mutation, 62 percent told their offspring between ages five and 25 the result.

For those parents who did provide results, it was reported that only 14 percent of children had a negative emotional or behavioral response to the information, while 36 percent had a positive reaction. The latter included a shift in lifestyle for some children including improved diet and exercise as well as smoking cessation in older children.

According to one author of the paper, Linda Patrick-Miller, PhD, CINJ member and assistant professor of psychiatry at UMDNJ-Robert Wood Johnson Medical School, the findings serve as a basis for developing targeted services for this population. "By evaluating additional emotional and behavioral responses, especially in offspring who are receiving potentially life-altering news, we will be able to develop interventions to foster positive responses for these children," she stated. "This might be as simple as focusing on how and what information is delivered, whether by a parent, an entire family, or with the assistance of healthcare professionals."

The research team, which also includes investigators from Fox Chase Cancer Center in Philadelphia and the University of Chicago, notes further research is warranted to identify individuals who would most benefit from intervention and the ideal methods of doing so.

About The Cancer Institute of New JerseyThe Cancer Institute of New Jersey (www.cinj.org) is the state's first and only National Cancer Institute-designated Comprehensive Cancer Center, and is dedicated to improving the prevention, detection, treatment and care of patients with cancer. CINJ's physician-scientists engage in translational research, transforming their laboratory discoveries into clinical practice, quite literally bringing research to life. The Cancer Institute of New Jersey is a center of excellence of UMDNJ-Robert Wood Johnson Medical School. To support CINJ, please call the Cancer Institute of New Jersey Foundation at 1-888-333-CINJ.

The Cancer Institute of New Jersey Network is comprised of hospitals throughout the state and provides a mechanism to rapidly disseminate important discoveries into the community. Flagship Hospital: Robert Wood Johnson University Hospital. Major Clinical Research Affiliate Hospitals: Carol G. Simon Cancer Center at Morristown Memorial Hospital, Carol G. Simon Cancer Center at Overlook Hospital, and Jersey Shore University Medical Center. Affiliate Hospitals: Bayshore Community Hospital, CentraState Healthcare System, Cooper University Hospital*, JFK Medical Center, Raritan Bay Medical Center, Robert Wood Johnson University Hospital at Hamilton (CINJ at Hamilton), Saint Peter's University Hospital, Somerset Medical Center, Southern Ocean County Hospital, The University Hospital/UMDNJ-New Jersey Medical School*, and University Medical Center at Princeton. *Academic Affiliate