Genetic Alliance

Genetic Alliance official logo

President and CEO Sharon F. Terry in 2017

Genetic Alliance is a non-profit health advocacy organization committed to transforming health through genetics and offers support to individuals and families affected by genetic conditions. Founded in 1986, the organization has grown to become a leading voice in the advocacy for genetic research, public policy, and patient support. Its mission is to promote healthy lives by integrating the voice of the community into research, policy, and services that impact individuals and families dealing with genetic disorders.

History

Genetic Alliance was established with the aim of providing a platform for support groups and individuals interested in genetics to share information, resources, and support. Over the years, it has expanded its focus to include the broader implications of genetics on health and disease, advocating for increased research funding, improved access to genetic services, and the ethical use of genetic information.

Programs and Services

The organization offers a wide range of programs and services designed to empower individuals, families, and communities to take control of their genetic health. These include:

• Registry and Biobank: A platform that facilitates the collection, storage, and research use of biological samples and health information, aiming to accelerate the understanding and treatment of genetic conditions.
• Educational Resources: Genetic Alliance provides a wealth of information on genetic conditions, testing, and services through its website and publications. These resources are aimed at both the general public and healthcare professionals.
• Advocacy and Public Policy: The organization works to influence public policy related to genetic research, privacy, and discrimination. It advocates for laws and regulations that protect individuals with genetic conditions and promotes equitable access to genetic services.
• Peer Support and Networking: Genetic Alliance fosters a community of support by connecting individuals, families, and support groups. This network provides a platform for sharing experiences, information, and resources.

Impact

Genetic Alliance has played a pivotal role in advancing the field of genetics and its application to health care. Through its advocacy efforts, the organization has contributed to significant policy changes, including the passage of the Genetic Information Nondiscrimination Act (GINA) in 2008, which protects individuals from genetic discrimination in employment and health insurance.

Challenges and Future Directions

As the field of genetics continues to evolve, Genetic Alliance faces ongoing challenges, including the need for continued advocacy for privacy and against discrimination, ensuring equitable access to genetic services, and addressing the ethical implications of emerging genetic technologies. The organization is committed to navigating these challenges by fostering collaboration among stakeholders and advocating for policies that support the integration of genetics into health care in a way that benefits all individuals and families.

See Also

• Genetic disorder
• Genetic testing
• Biobank
• Health advocacy