Dear Friends,

Today we expect the Senate Finance Committee to send Kathleen Sebelius' nomination for Secretary of HHS to the full Senate for confirmation. As we are all acutely aware, we need radical reform in healthcare. The new Secretary must be visionary and innovative. There are mountains to be moved, and the Secretary will be essential to this work.

For our part, we envision new and vibrant systems that will allow limited resources to transform healthcare. To begin, at our recent testimony to the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, we expressed our support for all of the federal agencies dedicated to health. In addition, we put forth an earmarking policy, recommending that disease-specific earmarks be abandoned as a mechanism for focusing on diseases. We will be proposing new methods for solutions to the great need we all have for infrastructure to accelerate discovery leading to diagnostics, treatments, and therapies. Stay tuned!

Sharon Terry, for the Council and Staff of Genetic Alliance

Register now for Discovering Openness in Health Systems, Genetics Day on the Hill, and Gene Screen!

Openness forms both the product and the process of Genetic Alliance. We believe that an environment of openness is essential to the health of individuals, families, and communities. The 2009 Annual Genetic Alliance Conference is a celebration of openness and an invitation to the community at large to abandon turf so that we can achieve truly productive transformation, of the health system and health itself.

Join us July 16 for Genetics Day on the Hill and Gene Screen, and July 17-19 for the conference. Register now> for the early-bird rate!

The passage of the Genetic Information Nondiscrimination Act (GINA) ushered in a new era for healthcare, one where individuals can put their health concerns first and obstacles to the proactive management of health are eliminated. Furthermore, the outcome of the 2008 presidential election will spark great changes in health policy. Genetics Day on the Hill 2009 will tackle these issues and educate legislative staff members on genetics and health.

Immediately following Genetics Day on the Hill, Genetic Alliance will host the first annual Gene Screen: A Night of Film on Genetics and Health. This mini-film festival, which opened for submissions in January 2009, will bring together genetics and health professionals, filmmakers who have taken on genetics and health as a subject for exploration, and interested members of the DC metro community. A Q&A with available filmmakers will take place after all films have been screened.

Genetic Alliance congratulates our 2009 Award Winners for their success and passion.

Frank Lehmann-Horn, MD, PhD - The Art of Listening Award honors a health professional who is a caring, receptive provider in the lives of individuals and families with genetic conditions.

Joseph D. McInerny, MS - The Art of Advocacy Award pays tribute to a visionary advocate who advances research, information, and/or support services to benefit organizations and health.

Gautam Naik - The Art of Reporting Award acknowledges a media professional whose reporting contributes to public awareness and understanding about genetic advancements or advocacy organizations and their impact on real people's lives.

Talecris Biotherapeutics - The Art of Industry Partnership Award honors a for-profit biotechnology, pharmaceutical, or genetics company whose track record models the benefits of creative partnerships between consumer advocates and industry to advance understanding and treatment of genetic conditions, disorders, and diseases.

Genetic Alliance is shaping health reform! Recent activity includes testimony, presentations, position papers, recommendations, and blog postings. In a clear and strong statement about coordination and collaboration across all federal agencies and stakeholders, Sharon Terry provided public witness testimony at a hearing of the House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies on March 18, 2009. Sharon discussed the necessity of harnessing the potential of health IT; developing a strategic, long-term plan to enhance clinical adoption of discovery research; and crafting better oversight frameworks for genetic technologies, rare diseases, and orphan products. Most notably, Sharon called for an end to disease-specific earmarking and a shift to utilizing the energy inherent in networks to benefit all stakeholders. For more information, read the testimony and the Genetic Alliance Position Statement on Earmarking.

Title II of the Genetic Information Nondiscrimination Act protects individuals from genetic discrimination in employment. The Equal Employment Opportunity Commission (EEOC) released a notice of proposed rulemaking for Title II on February 25, 2009, which opened a 60-day comment period for public input on the regulations for this part of the law. The Coalition for Genetic Fairness is drafting comments with the help and input of the genetics community. We strongly encourage individuals and organizations to engage in this policymaking process. The deadline for submitting comments is May 1, 2009. For more information, visit www.geneticfairness.org.

Making Sense of Your Genes: A Guide to Genetic Counseling provides a public-friendly introduction to genetic counseling and its applications. In a truly collaborative process, Genetic Alliance, the National Society of Genetic Counselors, students at the Johns Hopkins/National Human Genome Research Institute Genetic Counseling Training Program, and a number of independent advisors and reviewers partnered to create this publication. The guide includes general information about genetic counseling, tips on how to prepare for an appointment, and details about different specialties in the field. As with all Genetic Alliance publications, it is available as a PDF for free download at www.geneticalliance.org/publications. To order hard copies, please contact us.

Reverend Dr. Susan King, Associate Director, Life Science and Society Program, University of Michigan, is a new member of the Genetic Alliance Council (formerly the Board of Directors). She specializes in ethical and social justice issues in genetics, on which she teaches and presents regularly. She is also an Interfaith Minister and Spiritual Counselor at the Interfaith Center for Spiritual Growth, and a clergy member of a local church. She is a member of the Genetics Equity Network and the American Public Health Association Genomics Forum. In addition to years of experience in genetics and interfaith dialogue, she brings expertise in partnership development to the Council. She anticipates completing another doctorate, in pastoral psychology, in 2009.

Through novel partnerships in advocacy, engagement of individuals, families, and communities, and revolutionizing access to information, Genetic Alliance transforms health through genetics. As part of this effort, James C. O'Leary will assume the new position of Chief Innovation Officer. For Genetic Alliance, innovation extends beyond the creation of new processes and technologies to the disruption, reorganization, and realigning of systems. In this new role, James will work to foster innovation within Genetic Alliance and the community at large. He transitions from his previous role as Chief Operating Officer.

From secret weapon to front and center, Lisa Wise has moved into a new role at Genetic Alliance: Chief Operating Officer. Lisa has been with Genetic Alliance for five years, and her areas of influence and focus have always been cause-driven, community-focused, and entrepreneurial. In her duties as COO, Lisa oversees organizational operations and develops novel partnerships that lead to traditional and non-traditional funding streams. Using both nonprofit and for-profit funding models, Lisa continues to refine and expand Genetic Alliance's organizational approach to development.

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Thank you to our spring interns! Genetic Alliance 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.

Kavitha Ganesan, Public Policy Intern

Nicole Gulick, Public Policy and Newborn Screening Intern

Melinda Pearl, Genetic Counseling Intern

Nathaniel Snyder, Public Policy Intern

December 15-16, 2008, Sharon Terry presented a talk entitled "Genetic Information Nondiscrimination Act: Onramp to Personal Healthcare" at the 4th Annual Technology Predictive Health Symposium at Emory University to an audience of roughly 300 health professionals and academics.

On January 7, 2009, James O'Leary engaged participants at the National Coordinating Center meeting of the HRSA Genetics and Newborn Screening Regional Collaborative Groups in discussion on the novel use of web technologies for resource sharing and dissemination.

Sharon traveled to Madrid on January 29 to speak to attendees of a conference sponsored by Nature Publishing Group Iberoamérica about sequencing the human genome. Her presentation "Pruebas Genéticas: La Era de los Genomas Personales" (Genetic Tests: The Age of Personal Genomes) was delivered in English and simultaneously translated for the 200 audience members.

Sharon presented in three sessions at the 5th Annual International Conference on Rare Disease and Orphan Drugs (ICORD) in Rome, Italy, February 23-25. Two hundred people from around the world, all commited to finding treatments for rare diseases, attended the meeting.

March 25-29, Genetic Alliance hosted an Advocates Partnership Program with the American College of Medical Genetics at their annual meeting in Tampa, FL. Natasha Bonhomme, Amelia Chappelle, and James O'Leary presented posters on Consumer-Focused Newborn Screening, the Access to Credible Genetics Resources Network Quality Assessment Toolbox, and Community Centered Family Health History, respectively.

Wednesday, April 8, 12-1PM ET
Private Access: Privacy and Access in Perfect Balance
Meet Your Neighbors

Join Private Access for an in-depth discussion about the future of patient privacy in the ever-changing health IT arena. Find out how Private Access will help patients control their privacy on their own terms with a powerful suite of new web-based solutions.

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Wednesday, April 15, 12 PM ET

Getting Involved in DNA Day

Hot Topics in Genetics & Advocacy

DNA Day, this year on April 25, celebrates the completion of the Human Genome Project and the discovery of the double helix. Learn about activities, new initiatives, and ways to support the day or get involved locally.

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