Angelina's Impact: Genetic Counselors Share

It's been three years since Angelina Jolie announced to the world she carries a BRCA1 mutation and had a prophylactic double mastectomy to lower her risks of developing breast cancer. Below genetic counselors reflect on the impact she has made by sharing her story and starting widespread conversation about hereditary cancer and prevention.

 

Angelina Jolie’s disclosure of her BRCA1 mutation and subsequent risk reducing surgeries launched a thoughtful national discussion about genetic counseling and testing that no public service announcement could have accomplished. As a result, many women who otherwise might not have pursued testing did so, and for those who tested positive, the information may have been lifesaving. The reaction to Jolie’s announcement in combination with the Supreme Court’s holding against gene patenting and the subsequent drop in BRCA testing costs have contributed to a provocative debate about whether the time is right to offer population screening for hereditary breast/ovarian cancer.
— Beth N. Peshkin, MS, CGC, Professor of Oncology, Georgetown Lombardi Comprehensive Cancer Center
Angelina Jolie’s disclosure of her BRCA+ status seems to have increased awareness of BRCA-related breast and ovarian cancer specifically and of the availability of genetic testing for hereditary cancer susceptibility in general. The media coverage of her story led to an increase in self-referred patients to our cancer genetic counseling clinic, some citing her story specifically. Ms. Jolie’s disclosure of her medical management decisions after her positive test result also increased awareness of prophylactic surgery options, followed by strong reactions from some patients: “If I were BRCA+, I would definitely/never do what Angelia Jolie did.”
— Meagan Farmer, MS, CGC Cancer Genetic Counseling Director, UAB Department of Genetics
Angelina Jolie’s disclosure of her BRCA+ status has provided a reference frame and initiated a discussion about cancer genetic testing and prevention in a way that hadn’t been done previously. Her candid sharing in the mainstream media allowed for a glimpse into the complexity of addressing hereditary cancer risk and put genetic counseling in the spotlight. I think genetic counselors universally agree with her: “knowledge is power.”
— Leigha Senter-Jamieson, MS, LGC, Associate Professor, Clinical, The Ohio State University
Angelina Jolie’s disclosure of her BRCA status helped to revive the very important conversation between patients and primary care providers regarding family history. Subsequently, a larger volume of patients and providers are referring to cancer genetic counselors who are experts in the areas of discussing appropriate genetic testing options and the risks and management associated with high risk hereditary cancer syndromes. Ms. Jolie’s willingness to speak openly on this topic has given strength to individuals with a personal and/or family history of cancer to seek out information regarding genetic counseling and testing and we hope that these conversations continue in the future.
— Marjan Champine, MS, CGC, Clinical Lead Genetic Counselor, Huntsman Cancer Institute, Salt Lake City, UT
Angelina Jolie’s editorial sparked an important nationwide conversation about hereditary cancers. Fuel was added just a few weeks later when The Supreme Court ruled to overturn patents on the BRCA genes. The combined news attention of these events turned the BRCA genes into household names and drove the demand for genetic counseling and testing skyward. As the options for consumers to pursue genetic testing continue to grow, the field of genetic counseling is transforming to meet these needs. New ways to access critical genetic information are now available through telemedicine and digital genetic counseling tools.
— Danielle Bonadies, MS, CGC, Director of Cancer Genetics, My Gene Counsel, @dcBonadies

 

 

Photo Credit: Foreign and Commonwealth Office via Flickr