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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

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the new politics of biotechnology

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
Presented by Steve MayExecutive Director and Founder of the Forum on Genetic Equity
  • Former National Director of State Affairs, Hemophilia Federation of America
  • Former Director of Advocacy, New England Hemophilia Association
  • Former PAC Director, National Association of Social Workers, Vermont Chapter
  • Former Legislative Fellow, NY State Senate (2001-02)
assessment of current political environment summer 2011
Assessment of Current Political Environment (SUMMER 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

so what to do
SO WHAT TO DO????

ORGANIZE LIKE THE FUTURE DEPENDS ON IT !!!

organizing is the process by which we win hearts and minds
ORGANIZING is the process by which WE win HEARTS AND MINDS…
  • There are MANY, MANY, MANY types of organizing but for our purposes we are focusing on two models today: they are:
    • LEGISLATIVE
    • PUBLIC EDUCATION (institution-building)
why gina mattered
WHY GINA MATTERED…

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

the massachusetts genetic bill of rights 2011
THE MASSACHUSETTS GENETIC BILL OF RIGHTS (2011)

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

elements proposed in sb 1070 the massachusetts genetic bill of rights 2011
ELEMENTS PROPOSED IN SB 1070 THE MASSACHUSETTS GENETIC BILL OF RIGHTS (2011)

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

vermont opportunity lost opportunity gained
Vermont: “Opportunity Lost – Opportunity Gained”

From a Genetic Bill of Rights to the Most important non-binding legislative effort in ages

setting the stage in montpelier
Setting the Stage in Montpelier:
  • Unlike Massachusetts, the political climate is in general more favorable to our message, Vermont is not a Research and Development center like Greater Boston.
  • For example, The Vermont GBR proposed was intended to be much more ambitious than the Massachusetts legislation. It includes all of the elements of the MA bill and recognized that the mapped genome was the product of a public/private partnershipin which the state had an ownership interest
  • Our Model bill from MA became principle source for creation of the VT proposal-
setting the stage in montpelier con t
Setting the Stage in Montpelier (con’t)

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

IMPORTANT NOTE:

Washington DC is to Strasbourg as Boston or Sacramento is to Prague and London

tactics and strategy
TACTICS and STRATEGY

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 …

making lemonade meet hr 9
Making “Lemonade” - Meet HR 9

42 House (Co)Sponsors –

Passed Unanimously (Acclamation)

  • Declared 4.25.11 “Genetic Equity Awareness Day” in VT
  • Recognizes all Vermonters enjoy an inherent right to privacy (Vermont is one of 40+ states with no EXPRESSED right to privacy as a matter of law)
  • Recognizes one’s genetic makeup represents a unique expression of an individual’s personhood
making lemonade meet hr 9 continued
Making “Lemonade” - Meet HR 9 (continued)
  • Recognizes that one’s genetic information and material are the product of the individual whom yielded them
  • States that no person shall be denied access to any public accommodation under Vermont law
  • States that the HUMAN GENOME PROJECT was the product of a public/private partnership and that VT would take reasonable efforts to safeguard the public’s interest in the mapped genome
  • HR 9 is not binding but got 42 members on the record, the education process was invaluable and served to build for a future VT effort. The resolution itself is a statement of values. Members of the VT House are now on the record
movement building
MOVEMENT BUILDING
  • Legislation
    • Laws
      • State
      • County
      • Municipal
      • Ballot Measure

(where available)

    • Administrative Rulemaking
      • Governors
      • County Executives
      • Mayors
long term needs
LONG TERM NEEDS
  • Think about creating Progressive Biotechnology advocacy organs, calendar, public education opportunities
  • Seek opportunities to present materials in professional education settings (CEU’s, etc.)
  • Maximize existing relationship(s) to connect scholarship to a coordinated public policy agenda
  • Deepen state action to advance a Federal consensus
take aways
TAKE AWAYS
  • Think about our intellectual frame…
  • What does “WINNING” look like???
  • The ideas we are advocating are complex, how do we put a more human face on our agenda?
  • Look for low lying fruit, success creates success
one final note
ONE FINAL NOTE

“It is not your obligation to complete the task, but neither are you at liberty to desist from it entirely…” - PirketAvot