Genetics, Privacy and Applied Politics “It is one of the happy incidents of the federal system that a single courageous State may, if its citizens choose, serve as a laboratory; and try novel social and economic experiments without risk to the rest of the country." Justice Louis Brandeis
110 th U.S. Congress Bills Introduced: 14,000 Bills Passed and Signed into Law: 449 (3%) Ceremonial Bills Signed into Law: 121 (27%) Bills signed into Law include: financial market stabilization, raising the minimum wage, new GI and farm bills Brookings Institution
California State Legislature 2007 Bills Passed and Signed into Law: 750 Minor, Administrative Amendments:167 (22%)
Genetic Information Nondiscrimination Act First Draft Introduced in Congress: 1995 Final Bill Signed by President Bush: 2008 First new civil rights law passed by Congress since The Americans with Disabilities Act in 1990
State Genetic Discrimination Laws: First state laws prohibiting genetic discrimination in health insurance and employment regarding sickle cell trait were passed in Louisiana, Florida and North Carolina in the early 1970’s Throughout the ensuing two decades most states passed such laws including additional genetic conditions
State Genetic Discrimination Laws: Beginning of Human Genome Project (1990) led many states to begin enacting “GINA” style laws Wisconsin passes first “GINA” in 1991 By states had passed “GINA” laws
State Law Effect on GINA Progress Momentum at state level propels GINA 1995 New York, home state to GINA lead sponsor Congresswoman Louise Slaughter,passes “GINA” law 1997 National Conference of State Legislatures convenes Blue Ribbon Panel to consider Mapping Public Policy for Genetic Technologies 2003 Uniform State Law Commission convenes standing committee to consider model act covering misuse of genetic information states had passed “GINA” laws
Opportunities in Working With State Legislatures 1) State legislatures can be targeted Party affiliations, voting records etc. 2) Most state legislative officials have little to no staff US House of Representatives average -14 staff per member US Senate average- 34 staff per member Lack of issue expertise significantly increases opportunity to influence 3) State legislatures are small and closer to constituents Greater accessibility and opportunity for grassroots activism 4) State Legislatures are efficient
Challenges in Working With State Legislatures 1) State legislatures can be targeted Easier to target by deep pocket organizations 2) Most state legislative officials have little to no staff US House of Representatives average -14 staff per member US Senate average- 34 staff per member Lack of issue expertise increases opportunity for others to influence 3) State legislatures are small and closer to constituents Greater accessibility to business and other lobbyists as well as organized minority viewpoints 4)State Legislatures are efficient Poorly drafted legislation can pass without sufficient review
Benefits for Future National Campaigns 1)Develop message 2) Build coalitions 3) Learn from challenges 4) “Evolution” of law from state to state 5) Create momentum
The Genetic Bill of Rights The Next State Campaign for Genetic Policy Reform?