As we celebrate the phenomenal advances being made in genetics and genomics, we must also confront the reality that public policy decisions related to the translation of these advances into treatments and services that improve human health have not yet been made.
The Genetic Alliance policy department strives to educate government officials and policymakers in Washington, D.C.. Furthermore, on issues that are of utmost importance to our members, Genetic Alliance takes a leadership role. Current policy initiatives address:
- Genetic Discrimination
As biomedical research advances, genetic testing becomes a critical tool for healthcare providers and patients alike. Once enacted, genetic information nondiscrimination legislation will reduce the likelihood that an individual’s genetic information will be misused in health insurance or employment decision-making.
- Genetic Testing
Genetic testing is quickly becoming an integral part of many healthcare practices across the country and around the world. However, while the number of tests available continues to grow and the frequency with which these tests are done continues to increase, the regulatory system that should ensure their safety and accuracy has not adjusted. In this changing landscape, policymakers must strike a balance that ensures quality without also limiting accessibility.
- Open Access to NIH funded research
Genetic Alliance supports the National Institutes of Health (NIH) policy that requires open access to federally funded research. Under this policy, biomedical research funded through NIH grants or contracts would be available to the public.
- Newborn Screening
Genetic Alliance supports a national newborn screening policy that would ensure that all newborns, regardless of location, would be screened for at least 29 different genetic conditions.
- Stem Cell Research
Currently, policymakers across the country are debating the use of stem cells and enacting legislation that will affect the way American scientists are allowed conduct stem cell research. Genetic Alliance is dedicated to ensuring that individuals from all sides of the stem cell debate have access to relevant information and a forum for a nuanced discussion on this topic.
