As an undergrad, I spent a year working in two different Adult Foster Care (AFC) homes. These are homes that are staffed 24 hours a day, 7 days a week, 365 days of the year with support aids that provide everything from bathing and feeding to companionship and friendship. They care for adult residents that are unable to live independently due to mental illness, developmental delays, physical disabilities, and a wide range of genetic conditions. Most residents are in their fourth or fifth decade of life and enter these homes following the death of their parents. They are appointed another family guardian or are placed under the care of the state. The residents I worked with needed their medications and nursing services, but more than anything, they needed an advocate. I am writing this piece to advocate for my prior residents and raise awareness for this population.

Genetic counseling is a profession that aids those that are at a vulnerable time within their life. However, there are still many populations of individuals that could benefit from genetic counseling and testing that are not able to access it. One such population are the individuals living within AFC facilities within the United States. So many of these residents were given clinical descriptions of their symptoms instead of a medically actionable diagnosis prior to genetic testing or knowledge of genetic conditions. These clinical descriptions were inappropriate, outdated, and non-specific; diagnoses such as ‘mentally retarded.’ An unspecified diagnosis, such as that, does not provide any information on necessary care and medication.

Genetic counselors are specifically trained on navigating the complexities of ensuring all patients are autonomous in their decision to undergo genetic testing. This is particularly important for a population that has historically borne the brunt of genomic abuse and eugenics. I hope within my time as a genetic counselor that a system is developed which enables the AFC population under the care of the state to have access to genetic counseling including pre-test and post-test counseling which meets the needs of each individual patient.

Adult patients living within these AFC homes need advocates who can stand side-by-side with them in the field of genomics and ensure they are receiving the best possible care. Having a more accurate diagnosis would not only potentially improve their care plans, but also improve communication between the rest of the health team caring for these residents who may lack other advocates. The field of genetic counseling will continue to grow, and I hope it grows to a point where reaching these individuals is a possibility.

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