The Genetic Alliance is a national coalition of consumers, professionals and genetic organizations dedicated to enhancing the lives of everyone impacted by genetics. The Alliance is dedicated to ensuring the promise of genetic advances over the potential for harm. A fourteen year history of collaboration with both genetic support and professional organizations gives the Alliance unique insight into genetic discrimination. Contacts with the public through the Alliance toll-free Genetics Helpline allow us to respond emphatically that genetic discrimination is occurring and that active fear of genetic discrimination is affecting the decisions Americans make about employment, healthcare, genetic testing and research participation. The Genetic Alliance appreciates the opportunity to attest to basic principles we view as central to public dialogue about genetic nondiscrimination and employment.
Genetic conditions are universal.
Every man, woman and child has some genetic predisposition, condition or disease resulting from inherited or acquired genetic changes. Genetic information is inherently personal and must be treated as confidential and proprietary. Access to health care, education and employment is essential to all individuals, regardless of genetic inheritance. We know that history repeats what is not remembered. Some might call it anecdotal but to our members and the individuals, who call the Alliance Helpline, the specter is real and already knocking at our doors.