The Facebook Inc. application is displayed on an Apple Inc. iPhone in an arranged photograph taken… [+] in New York, U.S., on Thursday, July 26, 2018. Facebook shares plunged 19 percent Thursday after second-quarter sales and user growth missed Wall Street estimates. Photographer: Johannes Berg/Bloomberg
Thousands of women who carry mutations in the genes BRCA1 and BRCA2 and joined ‘private’ Facebook groups recently learned that their groups were vulnerable to a Chrome plug-in that allowed marketers to discover group members’ names and other private health information. That Chrome plug-in has since been removed from this, and apparently all other private groups, but has left a deep scar in the BRCA community’s trust in Facebook.
Many people have had their privacy breached on Facebook. So how are patient groups different and why should we be particularly concerned by this violation? Perhaps the privacy needs of patient groups are not well understood by outsiders, so I will use the BRCA group as an overarching example.
As a certified genetic counselor and a long-time director of a cancer genetic counseling program, I organized and facilitated in-person support groups for BRCA carriers for more than 15 years. BRCA1 and BRCA2 are human tumor suppressor genes found in all men and women. Individuals who carry a mutation (also called a ‘pathogenic variant’) in either gene have a high lifetime risk of developing several types of cancer, including those of the breast, ovaries, prostate, and pancreas. Many of these patients had undergone genetic counseling and testing due to their strong personal and/or family histories of cancer, and most had lost loved ones to these diseases. They all shared difficult decisions about whether to remove healthy body parts to reduce their high lifetime risks of developing cancer, and many shared their personal and very private stories of undergoing such surgeries, with or without reconstruction, and dealing with the emotional, psychological, and physical sequelae that followed. Sometimes they showed each other their breast reconstructions and prepared each other about what to expect. They often spoke of their family members, whether they had tested and were positive or negative for the familial BRCA mutation, and how and when to share this information with their children.
As my career evolved, I began to explore the role of genetic counselors in social media. I discovered the hidden world of Facebook patient support groups, and the lifeline these groups provide to others who desperately need the support, advice, and friendship of others experiencing the same things. This is true not just for BRCA carriers, but for people with many diseases – rare and common – and those who have children with medical conditions. This world is not well understood or recognized by the medical community. Yet, as I learned and connected with people in these support groups, I began to understand the critical importance of this resource for its members.
Many of these people had been searching for o
