What an exciting turn of events since our last newsletter! Who thought we would be able to say we have a GINA victory this year? By now, you all know that President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. As the first major civil rights bill of the new century, GINA provides individuals with federal protections against genetic discrimination in health insurance and employment. Congratulations to all of you who worked so hard so many years, and particularly to our champions on the Hill.

We do not rest, however, and have a great deal in the works at Genetic Alliance. Please read on and sample just a few of our activities – we look forward to working with you over the coming months. It will be an autumn of change, and we welcome increased access to health for all!

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!

Best wishes,

Sharon F. Terry
President & CEO

In August, Genetic Alliance released an online resource entitled “What Does GINA Mean? An Online Guide to the Genetic Information Nondiscrimination Act”. The tool provides a functional outline of GINA’s protections and how the legislation impacts every individual in the nation. The resource includes a history of the legislation, hypothetical situations of genetic discrimination, and key examples and definitions. Genetic Alliance encourages individuals and organizations to utilize the guide either as a resource for answering questions or as a flexible tool to adapt and customize within your community.

July 10, the largest group of Genetics Day participants in three years visited over 150 Congressional offices on Capitol Hill to thank the champions of the Genetic Information Nondiscrimination Act and discuss the implications of GINA. We laid the groundwork for addressing concerns in genetic testing oversight and health information technology, two important steps in the transformation of health through genetics. Read more about Genetics Day 2008 and view the slideshow

Following Genetics Day on the Hill, conference participants and interested Washington, DC residents gathered at E St Cinema for back-to-back sneak previews of IN THE FAMILY, a powerful and emotional chronicle of one woman’s exploration of her genetic predisposition to breast and ovarian cancer. Attendees were able to engage filmmaker Joanna Rudnick, Genetic Alliance President & CEO Sharon Terry, and cancer survivor and FORCE founder Sue Friedman in a Q&A session after the screenings. IN THE FAMILY airs October 1 on POV on PBS.

Friday kicked off the conference with four daylong symposia and workshops on research, policy, organizational development, and leadership. Friday night we celebrated GINA with awards for the bill’s Senate and House champions, as well as song and dance!

Saturday carried on the learning, sharing, and networking with 20 interactive workshops, and Saturday night we continued to celebrate by honoring five transformational leaders: Joann Bodurtha, Jannine Cody, Francis Collins, Clare Dunsford, and PTC Therapeutics for their extraordinary contributions to genetics and advocacy. All awards presentations, as well as song and dance, from Friday and Saturday nights can be found on the Genetic Alliance YouTube channel.

Sunday concluded the conference with three expert panels on race, gender, and genetics; public-private partnerships; and direct to consumer genetic testing. Participants were so engaged that we could hardly get them to stop asking questions! Everyone will just have to return next year for more dynamic, engaging sessions and conversations.

Mark your calendars for our signature events in 2009!

Genetics Day on the Hill
July 16, 2009

Annual Conference
July 17-19, 2009

Abstract submissions now open!

Health and the Presidential Elections
Presidential candidates John McCain and Barack Obama place healthcare reform at a high priority within their election platforms. In an online debate on the Wall Street Journal website August 7-11, health policy advisors to the Senators discussed their candidate’s healthcare proposals and strategies for addressing some of the greatest healthcare dilemmas of our time.

We’d like to give you an opportunity to ask the candidates about their thoughts regarding genetics and health. Submit your questions online and Genetic Alliance will consolidate them and ask the candidates to respond. We will post the answers on our website.

This report, third in the Genetic Alliance Monograph Series, details Eyes on the Prize: Truth Telling about Genetic Testing, a two-day summit held in September 2007, which followed the genetic testing pipeline from research and development to clinical practice.

In June, Genetic Alliance distributed ten CCFHH Program Awards for organizations to use the Does It Run In the Family? toolkit within existing programs and initiatives to seamlessly integrate conversations about family health history into diverse communities across the country. An online customizable version of the toolkit will be available to the public in late 2008.

Angioma Alliance

Brookdale University Hospital and Medical Center

The Duke University Institute for Genome Sciences & Policy

The Genomedical Connection

Heredity Project

The Lesbian and Gay Family Building Project of the Ferre Institute, Inc.

Progreso Latino

Southern Missouri Telehealth Genetics Services

University of Oklahoma Health Sciences Center College of Medicine

West Side Community Health Services

Andria Cornell, Public Policy Program Assistant, earned a BS in Biology from the George Washington University in May 2008. Andria first joined GA in August 2006 as a policy intern. Since then, her work at GA has included surveying stakeholders in the genetics community about their policy concerns, researching genetic testing issues for the Genetic Testing Summit in September 2007, and co-organizing three Genetics Days on the Hill.

Laura Silver, Executive Assistant, graduated from Wesleyan University in May 2008 with a concentration in the College of Social Studies, an integrated major of history, government, economics, and philosophy. She is very excited to have just moved to Washington DC and looks forward to taking full advantage of living in a city, especially this fall during the election year. She enjoys potlucks, political satire, and finding exciting things to do in Washington DC.

Tiphané Turpin, Communications Manager, joined Genetic Alliance in September 2008. She identifies and implements outreach initiatives, writes and edits web content, oversees organizational written communications, develops strategic communications plans, promotes events and tools, develops cohesive messaging and branding platforms, conducts external, media and stakeholder relations, and creates digital and print collateral. She earned a BA in English and Sociology at Georgetown University and a MA in Communication from U. Maryland, specializing in Public Relations.

Sim Wimbush, Program Assistant, joined Genetic Alliance in June after graduating from Grinnell College with a BA in Anthropology and a Pre-Health Concentration in May 2008. In Fall 2007, Sim worked as a Programs Intern conducting research on educational materials in genetics and genomics for the use of public health professionals. Sim now provides support for the Access to Credible Genetics Resources Network and is the interim Internship and Work-study Coordinator.

GINA Passed in the US House of Representatives

5/1/08 Sharon Terry was a guest, with other members of the Coalition for Genetic Fairness, of Representatives Louise Slaughter and Judy Biggert to watch the Genetic Information Nondiscrimination Bill pass in the House. The Members were eloquent and articulate about GINA and genetics. The bill passed 414-1.

Joseph Leiter Lecture

5/14/08 This year’s NLM Joseph Leiter Lecture was given by honoree Debra Lappin. She is a model of true advocacy – the ability to see how we can work together through novel partnerships toward what truly matters. Sharon and Diane Baker represented Genetic Alliance at the lecture and celebratory reception.

25th Anniversary of the Orphan Drug Act

5/19/08 The Orphan Drug Act was passed in 1983 through the combined efforts of many entities, particularly NORD. Sharon spoke on the many successes of the Act, but also addressed its limitations, including the need to incentivize even greater business risks in the development of these drugs.

International Congress on Rare Disorders

5/20/08 Sharon spoke about how genetic testing can be improved with a focus on access, quality, cost, and assistance to researchers and testing laboratories.

Human Variome Project Planning Meeting

5/25-29/08 James O'Leary presented a keynote address in Costa Brava, Spain about the importance of openness and consumer driven systems in the international effort to collect and archive human variation.

IOM Drug Forum Workshop on Breakthrough Business Models for Drug Development

6/23/08 Sharon described the impact of new models for funding translational research and technologies. She highlighted effective strategies that promote sharing of data and materials, reduce the burden of intellectual property negotiations, and facilitate small, multicenter clinical trials.

Regional Collaboratives

Genetic Alliance staff attended the following meetings: Mountain States Genetics Foundation, Southeast NBS & Genetics Collaborative, Heartland Regional Genetics and Newborn Screening Collaborative

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