familiesDNAJA

familiesDNAJA is a nonprofit organization dedicated to helping families understand and navigate DNA testing, genetic information, and related ethical and practical considerations. Its mission centers on education, advocacy, and support, with an emphasis on privacy, informed consent, and equitable access to resources. The organization serves families at all stages—from those considering testing to those managing results and implications for relatives.

Founded by a coalition of genetic counselors, patient advocates, and family historians, familiesDNAJA operates under a board of directors and an advisory council that includes clinicians, ethicists, and community representatives. Funding comes from grants, philanthropic donations, and partnerships with universities and health systems. The organization adheres to a code of ethics and periodically reviews its policies to reflect evolving best practices in genetics and data protection.

Its programs include educational materials such as guides and glossaries, online courses, webinars, and support groups. It maintains a resource directory linking families to genetic counselors, clinical services, and genealogical resources. It also offers a confidential help line and volunteer-led support networks. A core focus is helping families interpret complex test results, understand limitations, and make informed decisions about medical care and family communication.

familiesDNAJA promotes privacy-preserving data practices, with opt-in data sharing, clear consent, and transparent information about how any data may be used for research or program development. It collaborates with academic institutions, patient organizations, and community groups to expand access and ensure culturally competent outreach. The organization also engages in policy advocacy on issues such as genetic discrimination, data rights, and access to counseling.