Mission
Genetic Alliance engages individuals, families and communities to transform health. This requires that we as an organization understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness. We understand that to transform systems, we must start with our own, beginning with our very person. Such work calls us, both personally and professionally, to explore the deepest truths about ourselves and the systems we impact.
Mandate for Quality Genetic Services
Access to quality genetic services is critical to comprehensive healthcare.
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.
Core Values
Genetic Alliance commits to accomplish our mission with integrity, and to live by these values in everything we do.
Collectivity
We believe that everyone values health and well-being for themselves and those they love.
To achieve better health for all, we must embrace the diverse priorities of our allies while contributing to a common goal.
We must actively understand and honestly communicate our biases and ambitions,
practicing our mission, in order to cultivate and sustain trust.
And yet, we must also risk our comfort and be willing to trust in others,
for the factors that influence health and happiness are myriad and too great for any one organization to solve.
Indeed, we must support the inherent power of people’s choices and build systems that meet their needs,
to ensure that these benefits are available to all people.
We are responsible for the health of ourselves and all others, and,
we must act with purpose and haste to create the change we seek within our lifetimes.
Genetic Alliance: A Manifesto
Say: We are a loving person. Say: We will be a loving person. We are a network and we are here. We, fleet-footed allies. We, living along a continuum of vulnerability. Our path is lined with mirrors. Our signposts reflect deeper than the skin. Let us draw you up a society, or else look to some horizon. Language is a prism. So much governance balances on the body. There is no Smithsonian of the Self. Let us walk with you through the nucleotide wilds. Let us be transparent. Let us be the right amount of innovative or disruptive. Let us empower the I and embolden the Thou.
Let us be lost enough to develop the strength and dexterity of survivalists. Let us be resolute enough to help. Let us be us, individuals and families and communities. Let us tell a story. Let us have a conversation. Let us speak together as the autumn cools into winter. Let us understand a collectivity of kindness. And let us be present.
