Making Waves in the SEAs of Genetic Counseling - Leann To

My father fled Vietnam since my grandfather, a South Vietnamese Army Officer, was sent to a re-education camp after the Fall of Saigon. He slipped away on a small rickety boat during a quiet night at a South Vietnamese sea port with two of his sisters, even after his youngest brother’s multiple failed attempts had left him imprisoned. At the age of 19, my father stayed at Galang Refugee Camp in Indonesia awaiting sponsorship for US citizenship. 

I am a child of Southeast Asian (SEA) immigrants. My ethnic identity was shaped early on in my Vietnamese home, where I spent most of my time playing with my brother and cousins in a quaint Midwestern town. As I grew up, I became familiar with the role of a translator: from reading bills, writing emails, and explaining my days at school in Vietnamese.

 

However, going to the doctor’s office was often a frustrating experience that proved to be difficult. Due to language and cultural barriers, my mother had difficulty finding a doctor that would listen to her concerns, which caused a significant delay in her diagnosis. My family’s experience with healthcare barriers is just one drop in the ocean of many others in the Asian American (AA) community.

 

According to a systematic review by Young et al., many Asian Americans (which includes SEAs) face various challenges to accessing genetic counseling and genetic testing:

 

1.  Lack of Access and Awareness of Genetic Services: AAs have some of the lowest awareness levels regarding genetic testing services compared to other groups. One study found that AAs have the lowest proportion of knowledge regarding their family history, which in part can be attributed to immigration or forced displacement of certain ethnic groups.

2.  Language Barriers: Patients with limited English proficiency face a significant barrier. Studies have brought up that AAs were reluctant to ask questions during GC sessions due to difficulties formulating questions in English. Differences in language can also create difficulty in conversing with healthcare providers and understanding and interpreting test results.

3.  Cultural Factors: AA patients expected providers to give specific health recommendations. Some patients felt uncomfortable with the nondirective nature of genetic counseling. Family roles in decision-making was also highlighted: one study of East/SEA women showed an emphasis on collective family decisions, rather than an individual decision for a range of prenatal tests.

4.  Aggregation of Asian American Subgroups: Few studies have explicitly compared multiple Asian subgroups. AAs are a heterogenous group composed of various ethnicities with different needs. Lumping various Asian communities into one singular non-specific group with no options to categorize by ethnicity creates inequities and masks meaningful differences in health.

 

To serve the needs of a diverse and culturally rich population and reduce health disparities, our profession must take measures to increase diversity and promote inclusion to train graduates who will promote a society in which all people have equal access to culturally competent healthcare and the resources to make informed health decisions. This ongoing endeavor starts with the recruitment and support of students from backgrounds currently underrepresented in the field.

The NSGC 2022 Professional Status Survey reported that 36 genetic counselors identified as SEA, out of a total of 2,859 completed surveys. To put this in perspective, the US Census Bureau published data from the 2016-2020 5-year ACS stating that there are 5.9 million SEAs living in the US. We do not have enough SEA genetic counselors (or those from any racial/ethnic minority groups for that matter) to provide patient/provider concordance.

The National Match Survey Statistics for 2022 reported that 8% of students who matched identified as East/SEA. There was no increase for the 2023 application cycle. As a minority student in the field, I am excited to be able to be part of the future generation of diverse genetic counselors. Although I feel invigorated to promote DEIJ and improve health outcomes for all, I sometimes feel like a fish out of water in graduate school. To all my fellow minority genetic counseling students, these are the ways I found a sense of belonging and a space of support during graduate school:

 

Find your local community and relationships outside of the profession. Moving away to a foreign place far away from my family was a culture shock. I often felt homesick. If I ever feel like I’m drowning in grad school, I go to my favorite family-run Vietnamese restaurant in Pittsburgh. Being able to see others who looked like me and shared the same language reminded me of the reason why I want to be a GC, and I found people who could be my anchor. Creating your community, whether it be your mail carrier or the person that cuts your hair, can end up being some of the most supportive people outside of school. You never know where support can come from.

 

Connect with other minority students and GCs. I was able to meet other racial/ethnic medical genetic professionals through the Minority Genetics Professional Network. I established a monthly peer support Zoom call for current minority GC students and co-moderate it with another student I met via MGPN. Other places, like #GeneChat on Twitter has also provided me with online platforms where I can belong and relate to shared experiences with other minority GCs and students.

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Tôi là Tô Liên LeAnn, sinh viên tư vấn di truyền.