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Mandate for Quality Genetic Services

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Access to quality genetic services is critical to comprehensive healthcare.

It is essential that:

  • Individuals and families partner with their healthcare providers to identify needs, develop and monitor treatment plans, and manage their genetic condition.
  • Genetic information, resources, and services are integrated in home-based, community-based, and hospital care for individuals across the life span.
  • Referrals to support groups and resources are offered at regular office visits.
  • Healthcare providers refer individuals to appropriate specialists, as needed, including those outside of their health insurance plan.
  • Providers and payers consider the psychosocial, as well as the medical, effects of a genetic condition—on both the individual and his or her family—at each stage of life.
  • Healthcare insurance plans reimburse diagnosis and treatment for all genetic conditions.
  • Quality resources are available to assist individuals and their families in understanding family health history, signs/symptoms, and screening/testing options along with their implications, diagnosis, treatment, and long-term follow-up, if needed.
  • Healthcare providers with experience in genetic services are available to all individuals.
  • Providers, payers, and employers have policies and procedures to ensure the appropriate use of genetic information and comply with GINA where applicable.
  • Information about genetic conditions is provided to individuals and families in a culturally competent manner, which may include: language, educational level, and appropriate media.
  • Information about genetic research and clinical trials is available to affected individuals and integrated into clinical practice when appropriate.

Approved by the Genetic Alliance Council, November 2013

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