Study Opportunity: Exploring Gender Diverse Experiences of Hereditary Cancer Risk

A Johns Hopkins University genetic counseling student is conducting a research study exploring the experiences of transgender and nonbinary individuals navigating cancer care. The study involves a scheduled 45-60 minute interview over Zoom with the lead investigator. The interview will ask you some questions about your healthcare experiences relating to oncology and gender-affirming care.

Eligibility:

  • 18 years or older
  • Identify as trans* or nonbinary

AND at least ONE (1) of the following conditions:

  • Have received counseling about hereditary risk of cancer
  • Carry a mutation in a gene associated with elevated cancer risk
  • Have a personal history of cancer
  • Have a family history of cancer

If you are interested in participating, please complete this short survey.

With any questions, contact Sarah Roth: sarahroth@jhu.edu.

*“Proponents of adding the asterisk to trans argue that it signals greater inclusivity of new gender identities and expressions and better represents a broader community of individuals. Trans* is thus meant to include not only identities such as transgender, transsexual, trans man, and trans woman that are prefixed by trans- but also identities such as genderqueer, neutrios, intersex, agender, two-spirit, cross-dresser, and genderfluid.” - Transgender Studies Quarterly


LGBTQ is an acronym for lesbian, gay, bisexual, transgender, and queer or questioning. Like individuals of all communities, those identifying as part of the LGBTQ community can inherit BRCA mutations and be at risk for different types of hereditary cancers, like breast, ovarian, prostate, and pancreatic cancers. According to recent research, LGBTQ individuals can also be disproportionately affected by certain types of cancer, including breast, cervical, colorectal, prostate, and uterine cancers.

This community is on the rise—a recent Gallup poll notes that LGBT Identification has risen to 5.6% in the U.S. and that one in six adults in Generation Z consider themselves LGBTQ—but it is also an underserved population within medicine and cancer care. The Basser Center is an ally for LGBTQ patients and families. We hope to provide some useful resources to both LGBTQ patients and providers serving this community.

For Patients

Being part of the LGBTQ community can add an additional level of stress. Fear of discrimination and/or negative experiences with health care providers can lead individuals to neglect medical appointments such as genetic counseling or cancer screening. But if you have a family history of cancer and may be at risk for hereditary cancer, knowing whether or not you have a BRCA mutation can be lifesaving information. Sexual orientation and gender identity are important factors in genetic testing and counseling, cancer diagnosis, and cancer treatment. Disclosing your sexual/gender identity can help providers best support your cancer screening or treatment plans.

Knowing your family history is an important part of determining whether you may be at risk for hereditary cancer. BRCA mutations can be inherited from your mother or father. For some individuals, it may be difficult to find out your complete family history. Take our quiz to find out if you might be at risk and learn more about BRCA. 

If you are found to carry a mutation in BRCA1 or BRCA2 it is important to follow up with a healthcare provider who has expertise in treating patients with hereditary risk of cancer. Screening guidelines are typically based on sex assigned at birth but can be altered based on gender affirming care such as top surgery or hormonal therapy. Learn more about screening recommendations for BRCA-related cancer.

For Providers

A recent study has indicated that oncologists have limited knowledge about treating patients in the LGBTQ community, but want to do better.

How can you make your patients feel more welcome? As Karen M. Winkfield, MD, PhD, Chair of ASCO’s Diversity Inclusion Task Force notes, “If you walk into a clinic and you don’t see images of people from your community and there are no pamphlets available that speak to the health concerns of sexual and gender minority patients, it sends a message that you may not be welcome. When LGBTQ individuals are filling out a health intake form and there are no demographic fields asking about sexual orientation or gender identity, it sends a signal that there is information about their identity they need to hide.”

Important reminders:

  • Ask for your patient’s legal name and preferred name
  • Ask for your patient’s sex at birth, sexual orientation, and gender identity
  • Ask for your patient’s pronouns
  • Offer your own pronouns when introducing yourself
  • Offer equal visitation rights for your patients. For example, is there any requirement that their support person be legally related to them?

Be an ally to your trans and nonbinary patients. Trans individuals face severe discrimination, particularly trans women of color. The term “transgender” – or trans – refers to people whose gender identity is different from sex assigned at birth, as opposed to cisgender individuals who identify as the gender they were assigned at birth. Gender nonbinary individuals identify their gender as neither male nor female. Your nonbinary patients may use AFAB (assigned female at birth) or AMAB (assigned male at birth) to indicate their sex at birth. Learn more helpful terms in the Cancer Care Considerations for Sexual and Gender Minority Patients.

For genetic counselors, it is helpful to be aware that a disproportionate amount of  LGBTQ patients have complicated relationships with their families. Additionally, when taking a pedigree, it can be helpful for trans and nonbinary patients to avoid using gendered terms like “boys” or “girls”; instead, use children, siblings, grandparents. When counseling about cancer risk, it is preferable to say things like “people with ovaries ar at increased risk for ovarian cancer” vs “women with BRCA1/2 mutations have increased risk of ovarian cancer.”

Caring for your trans patients can provide additional complications. It is important to be aware of where your transgender patients are in the transitioning process. Transitioning can refer to coming out socially as your true gender and changing your name and pronouns. It can also refer to medical transitioning, which can include hormone replacement therapy (HRT) and surgeries like top surgery (mastectomy or breast enhancement) or bottom surgery (vaginoplasty, metoidioplasty, or phalloplasty). These are important considerations for genetic testing, hereditary cancer screening, prevention, and treatment. Yale University has recently provided helpful BRCA-related management recommendations and risk reduction options for transmen and transwomen. The Children's Hospital of Pennsylvania also has a helpful Gender and Sexuality Development Program.

Additional Resources

 

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