Genetic Alliance publications are aimed at emerging and experienced advocacy leaders, researchers, healthcare providers, and policymakers. All of our publications are available for free downloading and posting, as long as Genetic Alliance is credited as the author and the content is not modified in any way. Printing of publications is allowable for individual use only. To order bulk copies of any publication, return this form to Vaughn Edelson at vedelson@geneticalliance.org.

Genetic Testing and Molecular Biomarkers

Genetic Testing and Molecular Biomarkers is the official journal of Genetic Alliance. It is the leading peer-reviewed journal covering all aspects of genetic testing including molecular biomarkers.

"Does It Run In the Family?" Toolkit

The "Does It Run In the Family?" toolkit combines family health history, oral traditions, and genetics in order to help individuals and families gather their health history and use that information to make positive health choices. The toolkit consists of two booklets and supplementary materials that together help people collect, organize, and understand their FHH. Both booklets are generally applicable, but are designed to be customized by families and communities in order to better reflect their health concerns.

Children and Youth with Special Healthcare Needs in Healthy People 2020

Genetic Alliance and Family Voices collaborated with the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau to create a family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families.

How Do I Talk to My Family About My Genetic Condition?

It is not only important to collect family health history from your relatives; it is similarly important to tell them what you know about your own health. Genetic Alliance, in collaboration with Genzyme, created resources on how to share a diagnosis of a genetic condition with your family. The booklets are specifically about Gaucher, Fabry, and Pompe diseases, but the content can be applied to many conditions. We also worked with the CDC Office of Public Health Genomics to create three complementary pamphlets on screening and genetic testing for Lynch syndrome and the importance of talking to family about this hereditary cancer syndrome.

How-to Guides

Genetic Alliance offers several practical guides that provide valuable tips for succeeding in genetic advocacy work.

Making Sense of Your Genes: A Guide to Genetic Counseling

This booklet, available in English and Spanish, provides a consumer-friendly introduction to genetic counseling and its application. The guide includes information on preparing for a genetic counseling session and the different specialties in the field.

Genetic Alliance Monographs

Genetic Alliance has four monographs to date: "Genomics, Cancer Care & Advocacy," "Genetic Testing Stories," "Eyes on the Prize: Truth Telling about Genetic Testing," and "Community Centered Family Health History: How Do You Make Research Community-Specific and Universally-Relevant?" This series provides an in-depth look at specific topics in the worlds of genetics, health, and advocacy, from personal and community chronicles to high-level discussion and analysis.

Newborn Screening Newsletter

This quarterly newsletter provides updates on the advancement of Genetic Alliance newborn screening initiatives, current newborn screening news, and new opportunities to engage in newborn screening dialogues on a community, state, and national level. Click here to subscribe.

Policy Bulletin

Genetic Alliance participates in international, federal, and regional policy news and utilizes our rich network of thousands of organizations to provide you with the most up-to-date information on genetics and health public policy. The Policy Bulletin puts legislative updates, Congressional and regulatory agency activity, newly-released publications and reports, and opportunities for engagement in the policymaking process at your fingertips. Click here to subscribe.

Registry and Biorepository Bulletin

Genetic Alliance BioBank sends a monthly update to keep you informed of developments in the field of registries and biorepositories. This newsletter highlights relevant funding announcements, training opportunities, scientific meetings, and recent updates from the literature. Click here to subscribe.

Understanding Genetics: A Guide for Patients and Health Professionals

This manual covers basic genetics concepts, complemented with consumer-friendly information about diagnoses of genetic conditions.

Weekly Bulletin

Genetic Alliance sends a weekly update to our Announcements listserv to keep readers up-to-date on events and activities in the genetics community. All members of the genetics community are invited to submit events, meetings, and professional announcements for inclusion in the Genetic Alliance Weekly Bulletin. All submissions should be broadly applicable to the genetics and health community, rather than disease-specific. Due to the activity level of the 10,000 organizations in our network, submissions will be reviewed based on order of arrival, relevance to the genetics community, application to health systems, and the inclusion of a website link. Email bulletin@geneticalliance.org to submit your event to the Weekly Bulletin. Click here to subscribe.