2008 Annual Report

NSGC Updates

2008 has been an exciting year for NSGC! Your staff has enjoyed working with NSGC’s members on the various projects and initiatives we have undertaken during this calendar year. We have learned a great deal from working with the Board, Committees, SIGs, Task Forces and Workgroups this year and we are looking forward to building on this experience as we support the NSGC membership in 2009.

I would like to take this opportunity to introduce the members of the NSGC administrative support team. This is your staff and I encourage all NSGC members to contact staff team members directly for assistance or just to provide us with feedback. It is our job to support the NSGC membership in accomplishing NSGC’s strategic goals and mission, and we look forward to working with you to help NSGC grow!

-Meghan Carey, Executive Director

Meghan Carey, Executive Director	Emily Palmer, Project Associate
Emily DiTommaso, Operations Manager	Kathleen Tindall, Membership Associate

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In 2008, governance changes created a Genetic Counseling Access & Service Delivery Committee to pursue the strategic plan to improve reimbursement. The committee supports state licensure as well as federal efforts to have certified genetic counselors recognized as Medicare health care providers. NSGC has developed key supporting and education documents for these endeavors which are available to members at www.nsgc.org/members_only/tools/br_index.cfm. Our Government Relations Director, John Richardson, is working with members to educate Members of Congress about our unique reimbursement challenges.

The use of NSGC Guiding Principles and model bill language for licensure efforts are aiding states undertake licensure efforts. These resources are available for all members at www.nsgc.org/members_only/licensure/index.cfm. NSGC has counseled many in developing bills and efforts are creating success. IL, MA, NM, OK, TN and UT are currently licensing genetic counselors. SD and NJ have both enacted bills and licenses will be available in the future. FL, IN, MI, NY, NC, OH, PA, TX, WA, and WI are all in various stages of enacting legislation.

President Bush signed landmark GINA legislation into law on May 21, 2008. The NSGC Grassroots Action Network program worked as members received a personalized call to action and they responded by having their voice heard on Capitol Hill helping to pass the measure.

The Standard Occupational Classification Policy Committee (SOCPC) at the Department of Labor accepted NSGC’s request to include Genetic Counselors as a unique profession in the 2010 revision of the Department of Labor’s Standard Occupational Classification (SOC). The SOC is a listing of all occupations recognized by the Federal government, and is used to collect statistical information such as census, employment, and wage data. The SOC is revised every ten years. Recognition in the SOC will provide many benefits to the genetic counseling profession. The data collected by government agencies will help track pay scales, job duties, and skill levels of genetic counselors across the nation. Also, information systems and publishers that follow the SOC system, such as the Occupational Outlook Handbook and O*NET, will begin publishing information on genetic counselors to help students or those looking for a new career learn more about the profession.

Looking to 2009, NSGC will empower the membership to impact these issues. An NSGC Grassroots Action Network will be ramped up to respond to public policy issues. NSGC encourages the membership to work with our team in Washington, D.C. to influence issues important to genetic counselors.

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Interest in direct-to-consumer (DTC) genetic testing continued to grow in 2008 and, as an increasing number of companies began offering “at-home” tests; NSGC released a position statement to aid consumers considering DTC testing options. The position statement was shared with national print, radio and online news outlets in January.

National DNA Day was April 25 and NSGC distributed a news release about members taking part in a variety of community outreach initiatives to promote the importance of knowing one’s family health history and consulting with a professional who can help answer questions about genetic testing.

In early May, the Society reached out to more than 250 legislative and congressional contacts and news media with a statement by NSGC president Angela Trepanier supporting the U.S. Senate passage of the Genetic Information Nondiscrimination Act (GINA). The Associated Press interviewed Angela and a patient, and the story ran in more than 20 print and 70 online outlets. When President Bush signed GINA into law on May 21, NSGC released another statement applauding the legislation and recommending a three-step process to help improve genetic testing outcomes.

To tie into Father’s Day, NSGC developed “Three Questions Men Should Ask About Prostate Cancer” to raise awareness about prostate cancer detection and prevention. Several news outlets ran the questions and quoted Angela Trepanier, including the Washington Post, U.S News & World Report, Forbes, BusinessWeek, Atlanta Journal Constitution and HealthDay.com.

In August, NSGC created a news release promoting the value of genetic counseling that was distributed to targeted national and regional media outlets prior to a direct-to-consumer advertising campaign about at-home genetic tests by Myriad Genetics.

In conjunction with Breast Cancer Awareness Month in October, NSGC created a news release about direct-to-consumer marketing campaigns and common breast cancer myths. The news release was provided to health and medical reporters as well as science and biotechnology reporters who had been covering developments in the direct-to-consumer testing industry.

Also in October, NSGC created a news release based on new research that was presented at the 27th Annual Education Conference suggesting that patients who discuss their genetic disease with friends and family adapt better to life with their disease. The news release was provided to health and medical reporters and was posted on PRWeb. At the conference, Angela Trepanier met with the genetics reporter of the Los Angeles Times and participated in a question-and-answer session about the future of genetic testing that was featured in the publication.

NSGC spokespersons were featured in stories in more than 135 national and regional news outlets, including “CBS Evening News with Katie Couric,” Lifetime TV, Parade Magazine, More Magazine, Science Magazine, Shape Magazine, Wall Street Journal, Los Angeles Times, Chicago Tribune, Boston Globe, Associated Press, national radio show “Marketplace,” MSNBC.com, Newsweek.com and Parents.com. Overall media placements reached an estimated audience of more than 250 million in 2008.

The above accomplishments were done in coordination with NSGC’s public relations firm, Public Communications, Inc. (PCI). For more information on PCI, please visit www.pcipr.com.

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NSGC always wants interested members to have the opportunity to share their skills with NSGC in a rewarding and meaningful way. Below is information on how to get involved in NSGC. As always, if you have any questions, please feel free to contact the NSGC Executive Office at nsgc@nsgc.org, or 312-321-6834 for more information.

The easiest way for members to identify themselves as a potential volunteer or resource will be to ensure that you have submitted your name to the NSGC Volunteer Database. While NSGC leaders will always reach out to members who have known expertise or time for special projects, the NSGC Volunteer Database will be a primary resource for identification of members who may be interested in special projects as they arise. To add yourself to the NSGC Volunteer Database, please visit http://www.zoomerang.com/Survey/?p=WEB228H7WW8UBT today.

NSGC would not exist without the strong leadership of its members, members like you. Visit the website at www.nsgc.org/members_only/leader_volunteer_program/index.cfm for more information about how you can get involved with NSGC! This website contains various resources that are meant to enhance your volunteer experience to make it more rewarding.

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