The New Politics of Biotechnology. WHY STATES MATTER?. THE TARRYTOWN MEETINGS (JULY 25-27 2011) TARRYTOWN, NY. Presented by Steve May Executive Director and Founder of the Forum on Genetic Equity. Former National Director of State Affairs, Hemophilia Federation of America
WHY STATES MATTER?
THE TARRYTOWN MEETINGS (JULY 25-27 2011)
Divided Government is gridlock, Washington is Gridlocked, GOP House and SCOTUS, Dems control Administrative State (Presidency )and US Senate
Politics is war by other means and always been
Winning is defined by the maintenance and preservation of political power
Political Power is broken down into two clusters: soft power (influence) and hard power the ability to impose your politics on others in spite of their interests and concerns
ORGANIZE LIKE THE FUTURE DEPENDS ON IT !!!
Our children will recognize GINA as the Federal legislation which acknowledge that Genetic Bias is actionable as a matter of law.
GINA was only made possible as a result of multiple actions at the State level around the country
In retrospect, these state actions served to form a political consensus
VERMONT and MASSACHUSETTS
BACKGROUND: The Massachusetts Genetic Bill of Rights was critically important for a variety of reasons- chief amongst them is location; Massachusetts is one of the hubs of research and development for the life sciences and biotechnology industries.
ONE IN SIX JOBS IN THE CITY OF BOSTON IS DIRECTLY TIED TO THE HEALTHCARE INDUSTRY
Major employers in Boston metro area include:
Hospitals (MGH, Beth Israel, Mass Eye + Ear, Leahy Clinic), Harvard, MIT, not to mention countless biobankers and medical device makers
ESTABLISHES PROPERTY RIGHTS FOR INDIVIDUALS OVER THEIR OWN GENETIC MATERIAL
ESTABLISHES THAT ONE’S GENETIC INFORMATION IS INTEGRAL TO ONE’S SELF AND THUS MUST BE PROTECTED UNDER THE MASSACHUSETTS IDENTITY THEFT STATUTE
REQUIRES ALL PARTIES HANDLING GENETIC MATERIAL COMPLY WITH THE FEDERAL CLIA GUIDELINES
PROHIBITS USE OF GENETIC INFORMATION IN UNDERWRITING AUTO, LIFE, LONG-TERM CARE AND DISABILITY INSURANCE AND HOME LOANS
LEGISLATIVE HEARING HELD BEFORE JOINT PUBLICHEALTH COMMITTEE IN APRIL 2011, BILL CURRENTLY UNDER REVIEW
From a Genetic Bill of Rights to the Most important non-binding legislative effort in ages
Our legislative bill drafter was largely unfamiliar with the area of law we were addressing (this is NOT unusual) but in her effort to “tweak the bill she inadvertently created significant technical problems…
We also were confronting the bill filing deadline, most statehouses have a legislative drop dead date and they differ from capital to capital
Washington DC is to Strasbourg as Boston or Sacramento is to Prague and London
Due to technical problems the legislation was compromised, after consultation with our lobbyist and bill sponsor, we decided it was most appropriate to consider other approaches …
42 House (Co)Sponsors –
Passed Unanimously (Acclamation)
“It is not your obligation to complete the task, but neither are you at liberty to desist from it entirely…” - PirketAvot