As 2008 draws to a close, we have much for which to be grateful. Several important pieces of legislation passed, most notably the Genetic Information Nondiscrimination Act and the Newborn Screening Saves Lives Act. And 2009 looks like it is dawning even brighter for healthcare and genetics!

Although the economy is in recession, we believe this is a time to take stock of our resources and devise methods to use them most productively. It is a time that calls for novel partnerships. In times of plenty it is easy to work alone, building organizational and agency silos as a result. In tough times, exciting collaborations form and creative solutions abound in response to challenges. Genetic Alliance is ready to collaborate, to the degree that we measure our success by your success.

We will continue to explore openness that will transform health through genetics. We are excited by the opportunities that 2009 will present, and we look forward to working and playing with you in the year ahead!

Happy Holidays!

Sharon Terry, for the Council and Staff of Genetic Alliance

In partnership with the American Society of Human Genetics and WJLA, the Washington, DC metro area ABC affiliate, Genetic Alliance launched the "Know Your Family Health History" public education campaign, to air in Washington, DC, Maryland, and Virginia throughout the holidays and into the new year. FORCE is also a sponsor of the PSA and Aetna will be sponsoring a phone bank in January, where interested callers can ask genetic counselors, physicians, and other health professionals questions about family health history.

Knowing your family health history is one of the most important things you can do for your health and your family's health. Check out the public service announcement here.

Talk to your family. Share with your physician. Talk about early screening.

On December 11, President-elect Barack Obama tapped former Senate Majority Leader Tom Daschle (D-SD) to be Secretary of Health and Human Services (HHS) in the next administration.

Mr. Daschle served in the House of Representatives for eight years before running for the Senate in 1986, serving through 2005. Throughout his tenure in Congress, Mr. Daschle demonstrated a strong commitment to improving healthcare quality and integrating genetics into health management. In 2001, Mr. Daschle introduced two bills containing prohibitions against genetic discrimination in health insurance and employment: the Protecting Civil Rights for All Americans Act, S. 19, and the Genetic Nondiscrimination in Health Insurance and Employment Act, S. 318. He also co-authored an opinion piece about genetic nondiscrimination in Science Magazine in 2001. In 2004, the former Senator was one of 58 Senators who signed a letter to President Bush urging expanded funding for embryonic stem cell research, later voting in favor of the expansion.

Since leaving the Senate, Mr. Daschle has become a leading voice for healthcare reform, having recently authored the book Critical: What We Can Do About the Healthcare Crisis. During the presidential campaign, Mr. Daschle served as a national co-chair and policy adviser to President-elect Obama. Currently, Mr. Daschle is the leader of the Transition Healthcare Policy Team for President-elect Obama, where he engages in community discussions on healthcare in the healthcare blog.

Genetic Alliance's mission is to transform health through genetics. This requires that we as an organization understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness. We understand that to transform systems, we must start with our own. The name 'board' no longer resonates; Genetic Alliance requires a governance structure that serves openness and supports the rigorous process of self-discovery (awareness) required during our decision-making. As we continually listen to the call of "what matters" among the millions of people who rely on our work, our governance process must be true to those many voices. And so, we have collectively discerned that it is time to transform the "Genetic Alliance Board" into a "Genetic Alliance Council."

The Council is discerning body drawn from a committed community determined to transform health through genetics. The principles of the Council include: Openness, Presence, Content, Transparency, Disruption, Participation, Diversity, and Collaboration.

Council Members

Sharon F. Terry, MA - President & CEO
Executive Director, PXE International, Inc.

Diane L. Baker, MS, CGC - Secretary
Past President, National Society of Genetic Counselors

Kemp Battle - Treasurer
Managing Director, Tucker Capital Corporation
Folklorist and Writer

Natasha Bonhomme (New)
Director of Strategic Development, Genetic Alliance

Sharon Kardia, PhD (New)
Director, Public Health Genetics Program, University of Michigan

Dr. Kardia is a leading researcher and advocate within the genetics community, and has been for nearly two decades. Her professional experiences and enthusiasm for openness align with Genetic Alliance's mission. She is a professor at the University of Michigan, where she is Chair of the Department of Epidemiology. She is also the Director of the Public Health Genetics Program in the School of Public Health. Dr. Kardia has published over 120 peer-reviewed publications. In her research, she develops strategies to uncover the complex relationship between genetic variation, environmental variation, and risk of common chronic diseases.

James Bialick, Program Assistant, earned a BA in Political Science from Boston University in May of 2007. Before joining GA James worked as a community organizer and international development work in Oaxaca, Mexico. James joined GA in December 2008 assisting with the Community Centered Family Health History and Access to Credible Genetics programs.

Natasha Bonhomme, formerly Program Manager, has been promoted to Director of Strategic Development, a new position created to oversee development in is broadest sense - nurturing the organization internally and externally to maximize its full potential. Natasha holds open space for both the creativity and the focus of Genetic Alliance, and increases open dialogue with stakeholders. She is also responsible for improving accessibility to organizational resources and has joined the Genetic Alliance Council.

Kristi Zonno, MS, CGC, Director of Genetics and Health Policy, joined GA in October. She works to integrate policy into Genetic Alliance initiatives to improve health, create effective systems and engage consumers in genomics research advances. Kristi earned a BS from Providence College, a Certificate in Clinical Research from Boston University, and a MS in Genetic Counseling from Arcadia University. Prior to joining Genetic Alliance she worked in Public Health as Program Manager for the RI Newborn Screening Program.

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Thank you to our fall interns - Alex Bolton, Public Policy Intern, and Sunny Hwang, Programs Intern - for all you have given to us and what you will continue to give as you seek out opportunities to truly transform systems. GA interns serve as crucial members of our team--they provide support and valuable input, help to shape our programs, and contribute innovative project ideas for resources, tools, and applications to be used by the genetics and health community.

At the annual meeting of the National Coalition of Health Professional Education in Genetics on Sep. 4, President & CEO Sharon Terry offered the lunch keynote address: "Genetic Information Nondiscrimination Act: An Overview" to an audience of healthcare providers, researchers and advocates. Amelia Chappelle, Associate Director of Genetics Resources and Services, and Vaughn Edelson, Program Coordinator, presented posters on the Access to Credible Genetics Resources Network and Community Centered Family Health History projects, respectively.

On Sep. 9, the Broad Institute in Boston held a Genomics of Common Diseases meeting, organized by Nature Genetics in association with The Wellcome Trust. Sharon spoke about "Consuming Genomic Information", and participated in a panel with George Church and Kari Stefansson.

On Sep. 19, at the 27th Annual Lab Institute Meeting in Washington, DC, Sharon presented a talk entitled: "Has Genetic Testing Reached a Tipping Point for Labs?" The other presenters included Knome and CMS, and a lively discussion explored topics from Direct to Consumer genetic testing to value based pricing.

Amelia presented on DTC to students in the Sarah Lawrence College Genomics Certificate Program in Bronxville, NY on Sep. 25.

Oct. 24-28, Genetic Alliance and the National Society of Genetic Counselors teamed up to host the third annual Partnership Program at NSGC's meeting.

Oct. 27 at the American Public Health Association annual meeting, James O'Leary, Chief Operating Officer, and Vaughn presented a panel on community-based family health history projects with four CCFHH partners: Institute for Cultural Partnerships, National Council of La Raza, National Psoriasis Foundation, and Seattle Indian Health Board.

At the Newborn Screening and Genetic Testing Symposium hosted by the Association of Public Health Laboratories Nov. 1-7, Natasha Bonhomme, Director of Strategic Development, spoke during the patient perspective panel about the Consumer Focused Newborn Screening projects, which are surveying 2,000 women nationwide to understand the public's perspective on newborn screening. She also discussed the importance of incorporating consumers throughout the research process.

Nov. 11-15, ten Genetic Alliance staff and Council members participated in the annual American Society of Human Genetics meeting in Philadelphia, PA. GA and ASHG hosted the fourth annual ASHG Advocates Partnership Program.

Building on her experience curating the ABCC6 variations, Sharon presented "Why Disease Advocacy Organizations make Excellent Curators of Locus-specific Variation" at the meeting of the Human Variome Project in Philadelphia, PA on Nov.10.

Genetic Alliance is working with Private Access to provide a novel solution to privacy issues surrounding cohort development. On Nov. 13, 2008, Sharon spoke to a leaders forum at the Association of Clinical Research Organizations roundtable in Pentagon City.

On Dec. 1, Vaughn shared a CCFHH poster with international attendees at a conference in Havana, Cuba, Medical Education for the 21st Century: Teaching for Health Equity.

Genetics Day on the Hill
July 16, 2009

2009 Annual Conference
July 17 - 19, 2009

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