The tenet “patient autonomy must be supported” is one widely accepted in the genetic counseling community through the Reciprocal Engagement Model (REM). This autonomy relates to the premise that patients know themselves best and have the right to determine how to proceed with health care. However, the lines of this tenet are often blurred for providers when emancipated minors are their patients (Dickens & Cook, 2005; Lane & Kohlenberg, 2012). In order to provide best care and respect for patients, the genetic counseling community must understand that emancipated minors have the capacity to make their own health care decisions. With help and support, genetic counselors can educate this vulnerable group and aid in their journey of self-advocacy (Veach, Bartels, & LeRoy, 2007).

Understanding Emancipation: Legal Pathways and Clinical Relevance

To start in providing best care and practice for emancipated minors, genetic counselors should be aware of what it takes for a minor to become emancipated. The three main ways they can do so are through legal marriage, joining the military or a court order. Emancipation is not a federal law; it varies by state and can be case-dependent. To receive court-ordered emancipation, an individual must be at least 14 years old, living on their own, financially independent, and the decision must be in the individual’s best interest. Understanding the struggles an individual has gone through allows a genetic counselor or other professional to provide more specific care for them.

Especially for genetic counselors, having a full picture of a patient can allow optimized care and tailored resources. Providers can then understand their patients’ perceptions of genetics and family ties in general, being able to tailor conversations and resources toward their patients’ specific needs. 

Ethical Considerations and Developmental Decision-Making

Along with the logistics behind becoming emancipated, ethical dilemmas are something genetic counselors should be aware of, and they frequently come up when emancipated minors are in clinic. There has been research, based on brain and behavioral studies, that shows minors typically take more risks in life (Steinberg, 2007). These risks may include not considering bigger impacts or thinking everything through when making medical decisions. For genetic testing, individuals receiving testing must be aware of all of the implications — past, present and future — that test results may have. Genetic counselors should be aware of the tendency of minors to be more impulsive so they can provide information to patients in clear and various forms, allowing them to make informed decisions. This awareness allows genetic counselors to prepare for clinics and, further, to provide patients with plans and resources before and after appointments.

Barriers to Care Faced by Emancipated Minors

Barriers to access pose another challenge that emancipated minors face; clinics must become more accessible and helpful. One barrier, for example, is that emancipated minors may have limited family history information. When pedigree taking in clinic, patients may not have all of the answers, or may not feel comfortable discussing family history in general. Being sure to explain why these questions are asked but providing care nonetheless is vital in validating the patient’s experience. This may be similar when discussing familial risk of a genetic condition. Emancipated minors may not know what to do with information about familial risk, so presenting them with options and talking through how discussions may go can aid in their decision-making process. Genetic counselors should talk to these patients about their support systems and community to make sure they have the support they need before and after these appointments.

This may be a good opportunity for genetic counselors to find support groups regarding patient conditions. Finding resources for patients should always be a priority, and for emancipated minors, it may be about seeing what resources in particular they need. This will help genetic counselors tailor this care towards them (Beal et al., 2020; Adams et al., 2025). For example, emancipated minors recently diagnosed with a rare disease may in particular be in search of community, and thus genetic counselors can help find support groups to aid in that. Additionally, genetic counselors may be able to connect emancipated minors with social services offered by their facilities to help these patients have access to all of the resources they need.

Common Clinical Missteps and How to Help

Despite efforts to make clinical spaces safe and accepting for emancipated minors, there have been instances where providers have failed these patients and provided inadequate care. For example, when discussing consent for genetic testing, genetic counselors may follow their typical path for assent but use language suggesting final consent from caregivers. This takes away from the autonomy that their patient has and is just one example of a situation to avoid. Genetic counselors should research these missteps in order to avoid them. Specifically, here are some counseling styles to be aware of:

• Stray away from directive counseling, so as to preserve patient autonomy in decision-making. Directive counseling in this situation may come across as paternalistic and may harm the relationship between patient and counselor. 
• Being aware of tone and body language can be vital to maintain the patient-counselor relationship as well as making sure the patient feels sufficiently supported (Veach et al., 2007).

Being aware of the current state of laws and guidelines for emancipated minors in health care is vital. Having personally worked with minors in and out of clinic, it is clear that there are unique circumstances to bring into practice. When working in adult clinics, it comes with challenges of its own. Thinking about how different each of these scenarios can be, it was clear to me that emancipated minors may bring together each of these specialities and provide genetic counselors with new challenges to be aware of, to properly care for their patients. However, being aware is only the start. Genetic counselors need to take action in preparing for these patients in clinic. Providing information before appointments to patients about logistics for appointment setting, as well as what the appointment itself may look like, may allow for more planning on the end of the patient. Listening to the barriers that patients face can allow genetic counselors to adapt to how and when they are providing care, perhaps switching appointment times or over to telehealth. There are many ways to make genetic counseling more accessible to emancipated minors. As research continues to expand, we must listen both to the research and to the voices of minors themselves, so that we can better understand what they need.  

References

1. Adams, A., Abshire, A., Smith, N., & Cheatham, L. (2025, January 18). Healthcare Access Barriers and Facilitators Among Youth Leaving Foster Care: A Scoping Review (Society for Social Work and Research 29th Annual Conference). https://sswr.confex.com/sswr/2025/webprogram/Paper58052.html
2. Beal, S. J., Nause, K., Lutz, N., & Greiner, M. V. (2020). The Impact of Healthcare Education on Utilization among Adolescents preparing for Emancipation from Foster Care. The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine, 66(6), 740–746. https://doi.org/10.1016/j.jadohealth.2019.12.009
3. Dickens, B. M., & Cook, R. J. (2005). Adolescents and consent to treatment. International Journal of Gynecology & Obstetrics, 89(2), 179–184. https://doi.org/10.1016/j.ijgo.2005.01.038
4. Emancipation in California | California Courts | Self Help Guide. (n.d.). Retrieved April 14, 2025, from https://selfhelp.courts.ca.gov/emancipation
5. Lane, S. H., & Kohlenberg, E. (2012). Emancipated Minors: Health Policy and Implications for Nursing. Journal of Pediatric Nursing, 27(5), 533–548. https://doi.org/10.1016/j.pedn.2011.07.014
6. Martin, K. J., Nause, K., Greiner, M. V., & Beal, S. J. (2022). Modeling changes in adolescent health risk behaviors approaching and just after the time of emancipation from foster care. Child Abuse & Neglect, 124, 105439. https://doi.org/10.1016/j.chiabu.2021.105439
7. Steinberg, L. (2007). Risk Taking in Adolescence: New Perspectives From Brain and Behavioral Science. Current Directions in Psychological Science, 16(2), 55–59. https://doi.org/10.1111/j.1467-8721.2007.00475.x
8. Veach, P. M., Bartels, D. M., & LeRoy, B. S. (2007). Coming Full Circle: A Reciprocal-Engagement Model of Genetic Counseling Practice. Journal of Genetic Counseling, 16(6), 713–728. https://doi.org/10.1007/s10897-007-9113-4
9. What is emancipation and how does it work? (n.d.). Legal Services for Children.Retrieved April 14, 2025, from https://lsc-sf.org/faq/what-is-emancipation-and-how-does-it-work/

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