As current and future genetic counselors, we are expected to be able to serve every patient population we come across. When I was assigned a class presentation on the unique challenges that come with counseling patients who are incarcerated, I was expecting to find research, guidelines, and resources. After scouring the internet, I found almost none of those. Limited research has been done investigating how to best serve the general medical needs of people who are incarcerated. While some specialty recommendations have been published, no such guidance currently exists for genetic counseling. This needs to change, as incarcerated patients have exceptionally different needs and obstacles compared to any other patient population we serve. 

There is likely a gap between incarcerated people who need genetics care and those who can actually access it, if we extrapolate from research regarding medical care for incarcerated patients in general.. However, there is currently no way to know the size of that gap, because neither of those data points have been published. As of Oct. 2024, there were over 1.8 million incarcerated people in the United States (Kang-Brown & Zhang, 2024). By chance alone, some of those people will have genetic conditions, have genetic predispositions to chronic disease, or have suspicious family histories. We have no idea how many. Guesses can be made based on general population rates, but would likely be underestimates, as incarcerated individuals have much higher rates of chronic physical and mental health conditions (Binswanger et al., 2009). Regardless of how many individuals need genetics care, it is safe to assume those who would benefit from our services are not able to access them. Of those with chronic physical conditions, 14% in state prisons and 68% of those in jails have never seen any health care provider (Lupez et al., 2024; Wilper et al., 2009). For patients with limited access to any care at all, it is unlikely that specialty care like genetic counseling is a common offering. But again, we have no idea to what extent.

While there is so much we don’t know about genetic counseling for incarcerated individuals, providers do not need to feel completely lost. Based on research that has explored medical care in jails and prisons, there are some things we do know:

• Medical care is exceptionally hard to access in jail and prison because of the high financial burden, unreliable escort to appointments, and unnecessary judgment from providers and other patients (Lupez et al., 2024; McCann, 2022; Vandergrift & Christopher, 2021).
• Disclosing personal information can feel risky. Guards or medical providers from the correctional facility will be present, so the appointment cannot be independent from the correctional system (Andrews, 2018; Harbison, n.d.). HIPAA exceptions also allow (but don’t require!) providers to share information with the facility without the patient’s knowledge or permission (Goldstein, 2014; South et al., 2024). Again, there is no guarantee any information shared will stay between patient and provider.
• Education and support have extra obstacles. Inmates usually do not have the freedom to attend outside support groups. Internet access may be restricted, behind a paywall, or unavailable entirely (Gardner, 2024). Physical documents may be more accessible but will be screened and potentially removed or restricted by the facility (Dholakia, 2022). With additional entities to coordinate with, scheduling follow-up can take months beyond the usual timeline.
• Family relationships are difficult. Incarceration puts immense strain on all relationships (Hayes, 2024; Maruschak et al., 2021), and communications with loved ones have time limits or monetary fees for every correspondence (Dholakia, 2022).
• Some resources for providers are out there. 
  • Contacting incarcerated patients for results disclosure or follow-up can be difficult and may vary by location. There are sites (usually by state) with instructions on how to contact an incarcerated person, such as California’s. 
  • The genetic counseling toolkit has a role-play and personal reflection exercise that walks through a case example with an incarcerated patient. This exercise allows genetic counselors to practice working with an incarcerated patient and have a space to address personal biases or discomfort.
  • For prenatal settings, ACOG has published recommendations for working with incarcerated pregnant, postpartum, and nonpregnant individuals. These recommendations are not specific to genetics, but may provide some guidance on how providers can approach these patients with care and respect.

Based on the known barriers to care, we can make guesses and assumptions about how to best help our patients. But we have few ways to know if any of the things we try are making a difference. We also have no way of knowing how many health care providers are implementing strategies to support this vulnerable population. Past research has laid a foundation to investigate what incarcerated patients need, yet no one has taken it up in the genetic counseling space. 

Most of us will not see incarcerated patients every day, or even in every position we work, but we cannot forget or ignore them. Our role is to serve anyone who needs our services, and within that role is the responsibility to advocate for those who have a harder time accessing care. Without any information about their needs, there is no way to do our part to meet those needs. We desperately need research regarding genetics care for incarcerated individuals, and resources to teach genetic counselors how to work with this unique population.

References

• Andrews, M. (2018, May). Telemedicine Opening Doors to Specialty Care for Inmates. Scientific American. https://www.scientificamerican.com/article/telemedicine-opening-doors-to-specialty-care-for-inmates/ 
• Binswanger, I. A., Krueger, P. M., & Steiner, J. F. (2009). Prevalence of chronic medical conditions among jail and prison inmates in the USA compared with the general population. Journal of Epidemiology and Community Health, 63(11), 912–919. https://doi.org/10.1136/jech.2009.090662 
• Dholakia, N. (2022, December 13). Prisons and Jails Keep Making It Harder for Incarcerated People to…. Vera Institute of Justice. https://www.vera.org/news/prisons-and-jails-keep-making-it-harder-for-incarcerated-people-to-communicate-with-loved-ones 
• Gardner, A. (2024, April). How Do You Get Health Care in Prison? WebMD. https://www.webmd.com/health-insurance/features/health-care-in-prison 
• Goldstein, M. M. (2014). Health information privacy and health information technology in the US correctional setting. American Journal of Public Health, 104(5), 803–809. https://doi.org/10.2105/AJPH.2013.301845 
• Harbison, A. (n.d.). Eliciting Medical History: Genetic Counseling a Prisoner. Genetic Counseling Toolkit. Retrieved April 22, 2025, from https://www.geneticcounselingtoolkit.com/cases/eliciting_medical_history/elicitingmedicalhistory2.htm 
• Hayes, T. (2024). Incarceration and its Impact on Family and Communities. Indiana State University Honors College, 42. https://scholars.indianastate.edu/honorsp/42 
• Kang-Brown, J., & Zhang, J. (2024, October). People in Jail and Prison in 2024. Vera Institute of Justice. https://vera-institute.files.svdcdn.com/production/downloads/publications/People-in-Jail-and-Prison-in-2024-Report.pdf 
• Lupez, E. L., Woolhandler, S., Himmelstein, D. U., Hawks, L., Dickman, S., Gaffney, A., Bor, D., Schrier, E., Cai, C., Azaroff, L. S., & McCormick, D. (2024). Health, Access to Care, and Financial Barriers to Care Among People Incarcerated in US Prisons. JAMA Internal Medicine, 184(10), 1176–1184. https://doi.org/10.1001/jamainternmed.2024.3567 
• Maruschak, L., Bronson, J., & Alper, M. (2021, March). Parents in Prison and Their Minor Children: Survey of Prison Inmates. Bureau of Justice Statistics. https://bjs.ojp.gov/library/publications/parents-prison-and-their-minor-children-survey-prison-inmates-2016 
• McCann, S. (2022, June). Health Care Behind Bars: Missed Appointments, No Standards, and High…. Vera Institute of Justice. https://www.vera.org/news/health-care-behind-bars-missed-appointments-no-standards-and-high-costs 
• South, A.-M., Haber, L. A., & Berk, J. (2024). Hospitalization Through the Lens of Incarceration. Journal of General Internal Medicine, 39(10), 1905–1909. https://doi.org/10.1007/s11606-024-08805-8 
• Vandergrift, L. A., & Christopher, P. P. (2021). Do prisoners trust the healthcare system? Health & Justice, 9, 15. https://doi.org/10.1186/s40352-021-00141-x 
• Wilper, A. P., Woolhandler, S., Boyd, J. W., Lasser, K. E., McCormick, D., Bor, D. H., & Himmelstein, D. U. (2009). The health and health care of US prisoners: Results of a nationwide survey. American Journal of Public Health, 99(4), 666–672. https://doi.org/10.2105/AJPH.2008.144279 

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