1. Consumers are referred to condition-specific specialists, as needed, including those out-of-plan.

2. Medications and supplements to treat genetic conditions are covered by the plan.

3. Consumers and providers collaborate on ways to identify service needs, develop and monitor treatment plans, and manage a genetic condition.

4. Resources are available to assist consumers and their families in understanding:

• symptoms;
• screening/testing options and their implications; and
• a diagnosis.

5. Providers consider the medical and psychosocial impact of a genetic condition on both individuals and their families at each stage of life.

6. A practitioner, experienced in genetic services, is available to plan members.

7. Consumers may choose their providers.

8. Policies and procedures about confidentiality of genetic information are in place.

9. Information about genetic conditions is provided to each consumer in a manner best suited to their needs and culture, which may include:

• their primary language;
• an appropriate educational level; and
• more than one medium.

10. Information about genetic research is available to the consumer and integrated in clinical practices.

11. Referrals to genetic peer support resources are offered at regular office visits.

12. Outpatient, home, and hospice care for individuals with genetic conditions is available.

The Genetic Alliance gives a voice to the common concerns of persons living with, or at risk for, genetic conditions and their families. An active coalition of consumers, professionals, genetic support groups and organizations, the Alliance builds partnerships to promote optimum healthcare and enhanced quality of life.

Representing over 300 support groups the Genetic Alliance links consumers, professionals and the public to genetic support groups and resource referrals through a toll-free helpline and website. The website offers a growing store of links to member webpages and their condition-specific resources--providing educational and support resources for both the professional and consumer communities.