Results from a Nationwide Survey
by Kalisi Logan
Beyond health risks and other issues, previvors have voiced specific concerns and difficulties about dating. Many previvors report that having a male or female partner who is understanding of their BRCA status and supportive of their decisions about cancer risk-reducing surgeries is important. However, few studies have identified male partners’ views toward risk-reducing surgeries, and no studies have assessed the views of female partners.
What was this study about?
I and two other researchers wanted to explore the attitudes of males and females in the general population about entering and maintaining a romantic relationship with women who are BRCA positive previvors. Specifically, we wanted to learn if these individuals’ willingness to date a woman is changed by her BRCA positive status or by her choice to have risk-reducing surgeries. We also wanted to identify at what stage in a relationship individuals want their potential partner to disclose her BRCA positive status, and what information they believe is important to disclose.
What did we do?
From September to October 2018, we recruited 788 adult U.S. residents who had a romantic interest in females from Twitter, Facebook and Instagram. We used social media posts, paid advertisements, as well as ResearchMatch, an online research recruitment tool.
When asked about gender, respondents replied:
- 85% identified as male
- 13% identified as female
- 2% identified as “other”
- 78% identified as heterosexual
- 14% identified as bisexual
- 4% identified as homosexual
- 4% identified as other
We also asked participants when and how they preferred a previvor to disclose her BRCAstatus, and how various aspects of being a previvor—having a disease-causing BRCAgene mutation, her choice to have risk-reducing surgery, etc.—may impact their willingness to date her.
What did we discover?
Our survey found that overall, participants’ willingness to date a woman is largely unchanged by her BRCA positive status and her choice of risk-reducing surgeries. Most (93%) indicated that knowing a woman had a BRCA1 or BRCA2 mutation would not change their willingness to date her. The survey also identified what stage in a relationship participants would want a previvor to disclose her BRCA positive status. Most (80%) indicated that disclosure should occur when the relationship became serious.
When asked about the importance of information and what information these individuals believe is important to discuss when a woman revealed her mutation status, many respondents (45%) said understanding the cancer risk associated with the inherited mutation was important. Interestingly, half of the respondents said the possible side effects of risk-reducing surgery were the least important information to discuss.
When asked about how learning a woman had a risk-reducing mastectomy would impact their willingness to date a woman with a BRCA mutation, most respondents (91%) indicated that their willingness would be unchanged. This was similar to learning that a woman had a bilateral salpingo-oophorectomy—most (84%) indicated this would not change their willingness to date.
Most respondents (68%) were concerned about their future children inheriting a BRCA mutation, while some (13%) were not concerned; 19% indicated they do not plan on having children in the future.
It is important to note that the views expressed by participants were entirely hypothetical; our survey asked what they would do in certain situations when dating a BRCA positive woman. It is unclear whether participants would hold the same views and expectations when actively pursuing a relationship with a BRCA-positive woman.
Our study showed that attitudes toward dating a BRCA previvor are generally favorable. Compared to previous work in this field, this study surveyed a larger population that included individuals who were not already in a relationship with BRCA-positive women. It is also the first study of its kind to survey both men and women regarding their attitudes toward dating BRCA positive previvors. It is our hope that these results can help previvors—not only those with a BRCA mutation but other previvors as well—make decisions about disclosing they have an inherited mutation that increases their cancer risk.
Kalisi Logan, MS, CGC, is a certified genetic counselor in the Texas Center for Pediatric and Congenital Heart Disease and a member of UT Health Austin’s Hereditary Cancer Screening and Risk Reduction care team. She helps people understand and adapt to the medical, psychological, and familial implications of genetic conditions.
Caitlin Mauer, M.A., M.S., CGC manages the Cancer Genetics Clinic at UT Southwestern. Her primary research is on analysis of the clinical impact of new genetic testing technologies in the cancer genetics space, as well as patient outcomes (both medically and psychosocially) after the identification of a hereditary cancer gene mutation.
Randi Zinberg, M.S., CGC is an assistant professor of Genetics and Genomic Sciences and an assistant professor of Obstetrics, Gynecology and Reproductive Science at the Icahn School of Medicine at Mount Siani. Her research focus is the study and evaluation of genetic counseling methodology(ies) and the development of innovative teaching strategies for genetic counseling students, residents, and fellows as well as the medical and lay communities.