Understanding the Undocumented Immigrant Experience

Beyond watching the recording, we encourage everyone to take some time to discuss and think about the guiding questions below.

1. What is one new perspective you have now after hearing this presentation?

2. Considering the obstacles undocumented patients encounter when accessing healthcare, could you describe a specific action or initiative you could take to alleviate these barriers?

3. Migration patterns to the United States have evolved over time. In the 1970s, there was a notable transition from European immigrants to immigrants predominantly coming from Latin America and Asia. What factors may be responsible for the shift in immigrant populations coming to the United States? Based on our current events, where do you think the next wave of immigrants will originate from and why?

4. If you offer free of charge genetic testing at your institution, do you know whether this service is federally or privately funded?

5. Do a quick Google search to find organizations that help undocumented immigrants within your location. Include this information in your genetic counseling toolkit. 

Role play: 

Engage in the following activity for 15-20 minutes.
Misha is a 30-year-old woman who is 12 weeks pregnant. She was referred to a virtual genetic counseling appointment due to a family history of premature ovarian insufficiency, intellectual disability in multiple male relatives, and tremors. You gather her family history and find that she is the only person out of her immediate and distant family who is in the United States. During the options discourse with her she shares that she is unable to travel to the hospital at this time, she is hesitant to say why. After a period of time she discloses that she is afraid of deportation due to her immigration status and that she would likely not follow up with testing because of her fear and financial reasons. With a partner, role play how you would engage with the patient after she discloses her current immigration status and concerns. Use the questions below to guide your discussion. 

1. What genetic condition is of potential concern for this patient's case?

2. What counseling theory could you apply to guide the way you would address the patients concerns?

3. How can you assure Misha that her privacy and confidentiality will be maintained throughout the healthcare process considering her concerns about her immigration status?  Consider whether it is necessary to include her immigration status in the medical record. If so, what alternative words would you use to describe her situation?

4. Who are other healthcare professionals within your institution that Misha may benefit from speaking with, and how should you communicate this information to her? Practice discussing this information while explaining the reasoning behind the referrals. 

5. After the patient seeks care and is found to have a mutation on [specify the mutation], she schedules a virtual appointment for post-test results disclosure. Given that her family members reside abroad, how would you discuss the advantages of cascade testing for her relatives? During this session, consider explaining why cascade testing is beneficial for her family, share available resources to help her connect with healthcare providers abroad, and outline other important considerations her family members should be aware of.

Stefania Alastre, MSPH, LCGC s a bilingual genetic counselor at Moffitt Cancer Center. She is a previous DACA recipient and is particularly interested in improving access to genetic services for minority and underrepresented communities. 

Daniela Diaz Caro, MS, CGC  is a bilingual research genetic counselor at Columbia University Irving Medical Center. She is a previous DACA recipient and has an interest in working to expand access to genetic counseling services in Latin America and marginalized communities in the United States. 

Daisy Hernandez, MS, LCGC  is a bilingual cancer and research genetic counselor at Los Angeles General Medical Center, a safety-net hospital in Los Angeles, California. She works primarily with underserved Latine Spanish-speaking patient populations, recent immigrants, and undocumented patients. She grew up in a mixed-status household and was also born at Los Angeles General Medical Center so she has a lived experience of the barriers to care that individuals from mixed-status families may face.

Alicia Lewis, BA  is a prospective genetic counseling student, current Master of Health Administration Student and Senior Clinical Research Coordinator at Columbia University Medical Center. 

Stephanie Soto, BS is a second-year genetic counseling student at the University of Maryland, Baltimore. She aims to understand how environmental injustices can contribute to disparities in health status across populations and increase access to genetic counseling resources for underrepresented communities. 

Jean Yasis, BS  is a first-year genetic counseling student and genetic counseling assistant at University of California San Francisco. She is a current DACA recipient, and she contributes towards community engagement to expand the reach of genetics for minority groups.

These resources are provided to help you explore the undocumented immigrant experience. They may not specifically center on healthcare or genetic counseling aspects.

Terminology

1. Homeland Security Terminology and Definitions

2. Immigrants Rising Glossary of Common Legal Terms

Books

1. The Undocumented Americans by Karla Kornejo Villavicencio

2. Someone Like Me: How One Undocumented Girl Fought for Her American Dream by Julissa Arce 

3. Lives in Limbo by Roberto Gonzales

4. Beautiful Country by Qian Julie Wang

5. Dear America by Jose Antonio Vargas

6. Underground America: Narratives of Undocumented Lives by Peter Orner

Movies and TV Series

1. Living Undocumented - Netflix

2. Stories Beyond Borders - Free online viewing

Resources for Genetic Counselors 

1. NILC resources 

   1. Healthcare access to undocumented immigrants (LINK)

   2. Public Charge Information (LINK) 

2. Sanctuary Doctoring Video - Loloya University (LINK)

3. Articles about undocumented patient care from AMA Journal of Ethics (LINK)

4. National Center for Medical and Legal Partnerships (LINK) 

Resources for Patients

1. The National Association of Charitable Clinics (LINK) 

2. Immigration Advocates Network (LINK) 

To find additional resources please see "patient resources" under our resource tab.