The provision of genetic services may differ significantly depending on the setting. Genetic testing may be offered in a dedicated medical genetics clinic, a primary care office, or a specialty practice such as oncology or neurology. Even within a specialty, models of care may vary widely. However, genetics services can be grouped into a few general categories:
- Usually housed within a large academic medical institution.
- Patient populations are primarily pediatric, but may include adults.
- Patients are usually referred by a primary care provider or other specialist for a wide variety of indications.
- Patients typically see a genetic counselor and geneticist (see Collaboration module for a description of these providers)
- Typically housed within a large academic medical institution.
- Focuses on a specific sub-population, disease group, or body system. For example, there are clinics specific for Down syndrome, neuro-genetics, cardiovascular, oncology, connective tissue disease, and maternal-fetal medicine.
- Patients may be referred by a primary care provider, general geneticist, or other specialist.
- Patients typically see a genetic counselor and geneticist (who may also be a specialist such as an oncologist or perinatologist).
- Typically offered by larger medical institutions, or by a department of health to extend genetics services into rural and under-served areas.
- Patients usually referred by a primary care provider, social worker, or school nurse.
- Providers include geneticist and genetic counselor, and sometimes other specialists such as nurses, social workers, and nutritionists.
ELSI Note: Given that most genetic services are in a large medical institution in an urban setting, outreach services can be critical to improving access. Yet outreach services can be costly and burdensome for the providers. Even with these services, some scholars in the field estimate that increasing demand for genetics services will far outstrip the number of genetics specialists available to provide them. This may be especially so as we learn more about the genetic contribution to common, complex disease.
Non-genetics provider offering testing
- For example, oncology, neurology, or perinatology providers may order genetic testing without the involvement of a genetics specialist.
- Providers may lack access to a genetics clinic, or a specialist may view the testing as routine.
- Patients may be referred for genetic consultation if a significant genetic variation is identified.
ELSI Note: The potential for mis-interpretation of genetic tests is great (see the Test Interpretation section), and non-genetics specialists may not have the time, inclination, or training to help a patient make sense of genetic testing results within the context of their lives and families.
- A variation on the outreach clinic, utilizing tele-communications technologies.
- An integrated model to provide more comprehensive, accessible, and cost-effective care.
- May focus on one or two specific conditions and involve specialists for each body system affected by a condition. For example, Providers may include an internist, surgeon, cardiologist, pulmonologist, physical therapist, nutritionist, social worker/counselor, psychologist/behaviorist, etc. Patients may attend clinic for an entire day and rotate through each specialty area.
Inside this program
- For more information on the various roles of genetics specialists, please see our Collaboration module.
Outside this program (links will open in new windows)
- Consider issues involved in providing genetic services in different settings through a series of case studies developed by the Genetic Services Policy Project at the University of Washington.