Updated On Jun 22, 2022
This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.
- Barriers to accessing genetic services exist. Some of these barriers include:
- lack of providers with expertise in a condition (i.e., there is no one in my state who is an expert on my genetic condition)
- location of provider (i.e., there is an expert, but it would be a 4-hour drive to see that provider)
- providers’ ability to accept insurance
- availability of appointments (i.e., wait time).
Some of these barriers can affect the individual (i.e., insurance status) while others can affect whole communities (i.e., lack of local providers). Some of these barriers are systemic, such as the workforce shortage of providers of genetic services, while others are based on faulty perceptions, such as lack of awareness of where and how to access genetic services.
There are many ways that we can attempt to increase access to genetic services, such as allowing more direct-to-consumer (DTC) genetic testing, changing who can be reimbursed for genetic services, or creating systems that provide genetic telehealth services. Each of these solutions will also have policy implications. Thus, conversations around access to genetic services are often complex and involving multiple policy areas, such as insurance, licensure of healthcare providers (e.g. nurses, genetic counselors, physician assistants or pharmacists) or gene patents.
Legislation and Regulation
Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.
Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on access to genetic services. Explore these position statements below.