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

110th 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 Legislature2007

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 sinceThe 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 1995 15 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

2008 47 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 efficientPoorly 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?