In Vietnam, the chances of genetic conditions and birth defects are high. However, estimates say there is one clinical geneticist for every 6,846,000 people, and no genetic counselors, as Vietnamese geneticists, who are mostly trained abroad, provide only limited genetic counseling to the high volume of patients they care for (Laurino et al., 2018).

It is in that context that I spent the summer between my first and second year as a University of Washington-Seattle genetic counseling student in Vietnam, where I had the opportunity to expand the above narrative of genetic services in the country. I shadowed geneticists in the Center for Endocrinology, Metabolism, and Genetics and Molecular Therapy at the National Children’s Hospital, Ha Noi, Vietnam, in July and August 2023. My goal for this rotation was to gain an understanding of the hospital’s workflow when it came to providing genetic counseling to patients, and to consider provider and patient needs in these genetic sessions. As a Vietnamese American passionate about providing genetic counseling to the Vietnamese-speaking population in the United States, I was also motivated to go to Vietnam to improve my medical Vietnamese language skills by interacting with patients everyday. 

My four weeks were an enriching Vietnamese language, culture and health care immersion experience. My day-to-day routine consisted of observing walk-in consultations (where there could be 60-80 patients coming through a clinic room per day) as well as genetic counseling sessions where doctors set aside time with families to explain genetic test results, a child’s diagnosis, and the family’s next steps (about two to three patients per day). Other days, I went to the inpatient specialty clinic and met with patients who were undergoing clinical trials for spinal muscular atrophy (SMA) or receiving enzyme replacement therapy (ERT) for their metabolic condition. My first week was both overwhelming and exciting, given the high volume of patients and the breadth of indications from chromosomal disorders, to differences of sex development, to biochemical disorders identified on Vietnam’s newborn screening program, and more. My supervising doctor modeled effective ways to walk patients through complex genetic explanations in Vietnamese with the analogies she used, and I was surprised to see how the Greenwood Genetic Counseling visual aids (in English) were effective for inheritance patterns and recurrence risk explanations. 

At one point, the geneticists gave me cultural insight into X-linked disorders when they affected young male patients, particularly when a patient’s paternal family (especially the grandmother) blamed the patient’s mother and the maternal family for causing the male patient to be sick. This is especially sensitive if the male patient is the paternal grandmother’s eldest grandson. This grandson is given the special title of “cháu đích tôn.” In Vietnamese tradition, it is the cháu đích tôn’s privilege and duty to carry on the patrilineal lineage by stewarding the family’s estate and maintaining the ancestral altar. For the cháu đích tôn to be sick is detrimental to the family’s pride and future. Moreover, the relationship between the daughter-in-law and her mother-in-law (mẹ chồng nàng dâu) can be very strained in Vietnamese culture. Once married, the daughter-in-law is expected to move in with her husband and his extended family and dedicate herself to homemaking and childrearing. Disagreements on these household matters can arise between daughter and mother-in-law, but the daughter, still viewed as an outsider to the family, must bear the criticisms and let her mother-in-law have her way, or risk disrespecting her elders. 

In some ways, to protect the daughter-in-law from misunderstandings that could lead to further mistreatment by her husband’s family, some doctors will choose to explain X-linked inheritance and recurrence risk privately to a mother, finding some excuse to have the father leave the room, unless the family has already looked into the genetic condition themselves and is aware that the patient’s condition was inherited maternally. The family unit is central to Vietnamese culture, and both doctors and patients are cautious of the potential harms that parental genetic testing results can bring after a child is diagnosed, including the blame and guilt that can ruin the peace in the family. Importantly, the doctors are also very cognizant of the financial barriers of genetic testing that delay diagnosis of rare diseases. Much of the expense of testing is due to the cost of shipping DNA samples abroad. Certain chromosomal analyses and Duchenne muscular dystrophy (DMD) exon testing can be done in-house, but panels and exomes are often sent to South Korea. Doctors present genetic testing as an option but know that it can be years until families can afford testing.

I never doubted I learned a lot about genetics that is applicable beyond Vietnamese patient care, but I also came away with professional lessons about goal-setting and resilience. My closest mentors and classmates know that I actually struggled a lot during and after the rotation to feel that I had made the most of my experience. The doctors in Vietnam encouraged me to participate in sessions, and I put my best foot forward, but I ruminated on my inadequate attempts at providing genetic counseling in a new country rather than embrace the growth mindset. Speaking Vietnamese with patients every day meant confronting what I felt was an insurmountable gap in my medical Vietnamese skills. Being the only genetic counseling trainee in a country without genetic counselors sometimes made me question the practicality and value of what I was trained to do, like taking a family history or discussing costly genetic testing options when the patient had more pressing concerns. Ultimately, I wanted to make a more impactful contribution, without having the skillset and experiences yet to do so as a student. 

I’ve spent the last two years processing how I felt about my experience professionally, including giving myself grace. Being a sponge absorbing knowledge in Vietnam was my greatest strength, though at the time it felt like my greatest weakness. There are plans to develop a genetic counseling training program in the University of Hanoi, and now I know that all the observations I shared with the genetics team at the Vietnam National Children’s Hospital will be helpful to inform the training curriculum of the first genetic counseling training program in the country. To any genetic counseling student who is heading to a new international rotation or with a personally meaningful population, here are some words of pride, excitement and wisdom to send you on your way. It’s not that I didn’t know all this coming into my rotation in Vietnam, but some things are harder to remember when you are far from home: 

• Lean on your supportive network of mentors and peers, who have a better idea of where you should be in terms of skills, and can remind you of your “why” for taking on an international rotation when you’re overwhelmed or spiraling. 
• Set realistic expectations and benchmarks for tracking progress for your goals. This can be challenging when you’re the first student at a rotation site, but try your best to demystify what successfully completing your rotation will look like based on what you know is in your control. At times, you will be asked to stretch and grow, and it’s wonderful to take on that challenge, but you get to decide your pace of growth and measures of success. Some days, showing up is all you can do, and that’s okay, too. 
• Treat the experience as one of many opportunities you’ll have to learn and reach your goal, rather than as a once-in-a-lifetime. The work you’ll produce during this one rotation is one contribution to the body of work that is your career. 

Acknowledgements

Thank you to Dr. Kathleen Leppig for connecting me with Dr. Dung Chi Vu, the first step in making my international rotation at the Vietnam National Children’s Hospital possible. Thank you to the knowledgeable genetic counselors and mentors who prepared me for my experience in Ha Noi: Brynna Nguyenton, Darci Sternen, Jennifer Thompson, & Mercy Laurino. And of course, thank you to the providers and families at the Vietnam National Children’s Hospital for all they’ve taught me during this invaluable experience.

Reference

Laurino, M.Y., Leppig, K.A., Abad, P.J., Cham, B., Chu, Y.W.Y., Kejriwal, S., Lee, J.M.H., Sternen, D.L., Thompson, J.K., Burgess, M.J., Chien, S., Elackatt, N., Lim, J.Y., Sura, T., Faradz, S., Padilla, C., Paz, E.C.d.-l., Nauphar, D., Nguyen, K.N., Zayts, O., Vu, D.C. and Thong, M.-K. (2018), A Report on Ten Asia Pacific Countries on Current Status and Future Directions of the Genetic Counseling Profession: The Establishment of the Professional Society of Genetic Counselors in Asia. J Genet Counsel, 27: 21-32. https://doi.org/10.1007/s10897-017-0115-6

Photo by Josh Stewart on Unsplash

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