Introduction

This Advocacy section of GenoCommunity.org is intended to encourage and assist you in learning about genetics policies being considered, identifying and communicating with advocacy organizations that influence genetics policies, and having your voice heard by those who are in decision-making positions that affect genetics policies.

 The Genetics Equity Network represents a partnership of diverse community, policy, and research organizations working through education, policy, and related activities to assure that genetics and its applications are used towards the reduction, not the widening, of health disparities. 

Get involved
You can join the Network’s email and mailing list by sending your name and contact information to Jody Platt, jeplatt@umich.edu.

 Find out more about the Network, policy activities, and advocacy by visiting our website:

 http://www.GeneticsEquityNetwork.org

Need for the Genetics Equity Network Diversity in the decision making processes of the institutions that define genetic policies is paramount to assuring fair application of advances, and is a necessary precondition to the application of genetics toward the reduction, and eventual elimination of health disparities.  Because the proliferation of genetic advances and policies is imminent, sustainable engagement of institutional leaders, and especially community members and leaders who have been left out of decision making processes to date, is critical.

Pending policies

 Genomics and Personalized Medicine Act of 2007 (S. 976)

Introduced by Senator Barack Obama [D-IL], March 2007

In addition to the proposal’s overall purpose of improving genomic data collection, research, interagency collaboration, and improving the quality and availability of genetic tests and treatment, which could improve genetics-related health care and make its potential benefits available to more people, this bill addresses some of the needs of populations defined by race or ethnicity that are most affected negatively by health disparities.  For example, there is a section in the bill that prioritizes the expansion of efforts to increase our understanding of the relationships between race, genomics, and health.   It calls for a special focus on 1) diseases that disproportionately affect minorities, 2) how to use genomics to improve health, and 3) how genomics can be used to improve genomic and clinical services for underserved populations.

 Minority Health Improvement and Health Disparity Elimination Act (S. 1576)

 Introduced by Senator Ted Kennedy [D-MA] in June 2007

By improving intra-governmental focus on genomics and environmental health issues in the ways described above, this bill could improve future genomics-related government activities and specifically increase the attention and resources devoted to genomics and health disparities.  This is the type of proposal the Network, with your help, can address by examining the details, questioning its potential impact, and determining what action could and should be taken.

Other Advocacy Organizations

Genetic Alliance - campaign to ACT NOW
Information about policy issues and current legislation is available. There are sample webforms or letters to send directly to your representatives or to help you draft your own message.

Coalition for Genetic Fairness - campaign to ACT NOW
The Coalition for Genetic Fairness seeks federal legislation outlawing the misuse of genetic information to discriminate toward individuals or populations. Currently, they are encouraging Senate to pass the Genetic Information Nondiscrimination Act, or GINA, (S.358) since GINA (H.R.493) passed in the House (420-3) on April 25, 2007. Sample fax letters are available to encourage your Senator to bring GINA to the floor for a vote.

Genetics and Public Policy Center
The Genetics and Public Policy Center offers more in-depth issue briefs, background about the science involved in genetics issues, and press releases about current genetic and policy issues.

Where to find other current legislation

Library of Congress THOMAS
It offers full text of legislation, bill summary and status reports, and records of roll call votes to see how your representative voted.

Where to find your legislators

United States Senate
Use the Senator search in the upper right. Links directly to webforms or to the Senator’s website will be provided.

United States House of Representatives
To find contact information for your Representatives, use the zip code search in the upper left of the home page. To use a webform, click on the Write Your Representative link. If transferred to your representative’s website, look for the Contact Us link to access a webform.