This Is What I Know. Now What Can We Do? – Racial Diversity in Genetic Counseling

Bryana Rivers, Cincinnati GC Student

The lack of diversity in the field of genetic counseling is an issue that has been present since the start of the profession. However, very few studies have actually been done on the presence of underrepresented minorities (URMs) in the field. A 2008 study by Mittman and Downs about the past, present, and future of diversity in our field explains that, despite efforts to increase diversity, the field of genetic counseling is still composed of over 94% non-Hispanic, white genetic counselors. The article focused on underrepresented racial and ethnic minorities within the field, such as African Americans, Native Americans, and Hispanic Americans, quoting these groups as comprising about 2 to 3% of the profession, but about 33% of the general population. That means that our presence in the field is vastly disproportionate to our presence in the general population.

Increasing diversity in the field is important to allow individuals like me to have colleagues and mentors who look like me and so that our patients can have providers who look like them. As a black female entering the field of genetic counseling, I can only speak about my own experiences, which may not be the same for all genetic counselors who belong to a minority group. Nonetheless, I think that it’s important that I share my experiences and that others have the opportunity to share their experiences as well.

One particular experience that stood out to me occurred during my summer rotation here at Cincinnati Children’s Hospital. My patients were siblings, a black male and a black female, with diagnoses of developmental disabilities and hypotonia. They were accompanied by their mother and their maternal grandmother. Both children previously had extensive genetic testing, including panel testing, single gene testing, and microarrays, which were all either normal or had several variants of uncertain significance (VUSs). For social reasons, variant tracking in the family was not attainable. What we did know, was that one particular VUS of interest was presumed to be paternally inherited.

Our patients’ mother was hoping to get some answers from us so that she could have a definitive diagnosis for her children. Without a diagnosis, she had been struggling to access the necessary resources they needed in school. Unfortunately, for this family, we could only communicate our suspicions of what was causing the developmental disability, but we could not give them a definitive cause, diagnosis, prognosis, or recurrence risk.

At one point during the appointment, the mother had a question for my supervisor and me. She stated that she had an honest question, but that she was unsure of how to ask it without coming across as offensive. We encouraged her to ask the question anyway. She wanted to know if we, as black health care providers, have seen “other people who look like us” with the same variant found in her children. Honestly, I wasn’t sure what to say. I deferred the question to my supervisor who explained that the variant found in her children has not been previously published or described in other patients. She then went on to explain that the mother brought up a great point about VUSs in black patients. Being that we are a less-studied group, VUSs are more commonly seen in minority populations than in white populations. The patients’ mother added that she felt that there are barriers to healthcare and genetic testing in minority populations that also contribute to the lack of data and knowledge of how certain genetic variants affect our health. Afterwards, she told my supervisor and me that we have a responsibility as black women to improve our knowledge of genetic variants in minority populations while making sure that they are not being taken advantage of by the individuals conducting the research.

That was a loaded statement that I have reflected a lot on since I saw that family. In that moment I felt heartbroken for this woman who had worked so hard to obtain the best care for her children, but had so many doors closed in her face while trying to access the necessary resources. However, I also felt thankful that my supervisor and I were the ones who saw these patients because their mother was able to open up about questions she has been holding onto and challenges that she has been facing while advocating for her children.

I cannot stress enough how important it is for patients to feel comfortable, to feel heard, and to know that they will not be ignored or discriminated against by their providers based on the color of their skin. I don’t want to suggest that a genetic counselor who wasn’t black wouldn’t have listened to her, but there are factors outside of what we do and say that can have an impact on our patients. Just the fact that she was able to lower her guard a bit because we share the same racial background as her speaks volumes.

People like seeing themselves represented in their social and professional circles, including their healthcare providers. This is just one example of how increasing diversity in the field of genetic counseling can help our patients. But now the question is: Why have past efforts failed to improve diversity in the field, and what can we do to fix it?

--Bryana Rivers, 2nd Year Genetic Counseling Student

Qualified Bilingual Staff & Language Access Services

QBS Badge Backer

Growing up, I spoke both English and Urdu – the native language of Pakistan, which is where my parents were from. I never considered my bilingual skills to be anything special until I started my time at the University of Cincinnati/Cincinnati Children’s Genetic Counseling Program. During our orientation week, a member of Cincinnati Children’s Hospital Medical Center’s (CCHMC) Diversity and Inclusion department spoke with us about cultural competency. The presentation included information on Language Access Services, and a program called the “Qualified Bilingual Staff”. In CCHMC, if any staff/employees are bilingual, they can train through the hospital to be able to become a Qualified Bilingual Staff (QBS). A QBS member may
  

1) Provide interpreting to, or speak directly with patients and their families at the hospital outside their appointments in the target language, and/or

2) Provide interpreting to, or speak directly with patients and their families at the hospital during their medical appointments

To become a QBS member, one must first take an assessment in their target language, which in my case was Urdu. Since Urdu is considered a rare language, I took my assessment over the phone rather than in person. The assessment tested my spoken skills in Urdu, progressively becoming more difficult till I could no longer answer the questions being asked. Based on the assessment scoring, one is assigned either a QBS Level I or QBS Level II. 

Falling in the Level I range meant that you could provide interpreting to, or speak directly with patients and their families at the hospital outside their appointments, for example, if a patient is asking for directions in the hospital. Falling in the Level II range meant that you could provide interpreting to, and speak directly with patients and their families in the target language in their medical appointments. Fortunately, I was assigned to be Level II. An additional perk of being Level II is that you can get paid for providing interpreting for medical appointments! 

Before you can be recognized as a QBS member, you must first complete QBS training via CCHMC. I completed my training at the end of my first year in the genetic counseling program, right before I headed out of town to my summer rotation. Since returning to CCHMC for my second year, I have not provided any interpreting for medical appointments (by choice), but rather I have taken on a part time job with the Language Access Services department. At my job, I have worked to create a resource for interpreters whose target languages are rare, like mine. While there are plenty of resources available for interpreters of the more common languages such as Spanish and Arabic, there aren’t many training resources for interpreters who have rare target languages, such as Urdu. In creating this resource, I have also had the opportunity to shadow the CCHMC staff medical interpreters.

The experience of training as a QBS member, and working with Language Access Services has allowed me to appreciate the role of medical interpreters from the perspective of the interpreter. I realized how helpful this experience was when I myself counseled a patient with an Arabic medical interpreter present in the room. I found myself to be much more comfortable with the medical interpreter in the room, and it made the delivery of information to the client much more effective.

I am grateful to have been a part of an institution that has a well-developed Language Access Services department, and provides services every day to numerous patients and families with limited English proficiency. I am passionate about continuing to grow in my cultural competency, and my work with the Language Access Services has helped contribute to that by allowing me to better appreciate the intertwining nature of language and culture.

Fatima Amir, Class of 2018