2007 Annual Report

President's Report

The 2007 year was full of many new and exciting accomplishments for NSGC. Both our profession and society have grown so much in a short amount of time, and in 2007 we really began to refocus our efforts to meet the changing needs of our membership.

Strategic Direction & Initiatives
We have made huge strides with regards to the Strategic Plan that was approved by the NSGC Board of Directors at the end of 2006.

Strategic Initiative One
As you know, Strategic Initiative number one is to expand access to genetic counseling services by actively pursuing reimbursement for Certified Genetic Counselors. Some of the accomplishments for this strategic goal include:

• NSGC met with key policy makers at the Centers for Medicare and Medicaid Services to explain our main goal with respect to federal policy – for genetic counselors to become recognized as healthcare professionals by CMS, which requires an amendment to the social security act. This could ultimately result in genetic counselors being able to get reimbursed by Medicare plans
• NSGC also met with representatives from ASCO, SMFM, ISONG and ACOG to discuss our initiatives regarding increasing access
• NSGC members have met with many Members of Congress and participated in a “Hill Day” meeting with multiple congressional offices
• State licensure guiding principles and model language were developed
• Leslie Cohen, the 2008 Chair of the newly formed Genetic Counseling Access and Service Delivery Committee, attended the Genetic Testing and Genetic Risk Assessment for Health Plans conference in Washington, D.C.
• Language for the draft Federal bill is being finalized by the House legislative counsel, facilitated by Rep. Kilpatrick’s office
• Discussions are underway to secure a champion and sponsors for the Federal bill

NSGC has also been working hard at increasing our presence in Washington D.C. and becoming more actively involved in discussion regarding public policy. As you know, we have staff working for NSGC in Washington D.C. including our government relations specialist, John Richardson. With the help of our Public Policy Committee, our liaisons and our Washington D.C. staff we have been able to continue with many of our already existing efforts and implement new initiatives. Highlights of these activities include:

• NSGC has provided comments and feedback on several pieces of legislation, including bills from Senators Kennedy and Obama’s offices
• NSGC, represented by Cathy Wicklund, is a member of the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health. Meetings began in 2007 and will continue until 2010
• Continued presence at the SACGHS meetings in Washington DC. NSGC gave public testimony on oversight of genetic testing and coverage and reimbursement of genetic counseling services in July (Cathy Wicklund) and also participated in a Roundtable on genetics education and training in November (Angela Trepanier)
• Attended a workshop hosted by ACMG to consider the issues in developing a national system for collaborative research in rare and heritable genetic diseases
• Attended the Physician Assistant and Genomic Medicine Meeting in Washington D.C.
• Advocacy for the genetic counseling profession and its listing in the Department of Labor’s Standard Occupational Classification
• Continued membership of the Coalition of Genetic Fairness to support GINA legislation
• Gained media attention with the assistance of NSGC’s public relations firm, PCI

Strategic Initiative Two
The second strategic initiative, to promote an organizational culture that will enable NSGC to adapt to evolving needs of genetic counselors, has experienced major accomplishments. The NSGC Board of Directors took on the major task of examining and evaluating the governance structure of NSGC. Addressing governance issues was a key objective of our Strategic Plan in order to ensure that our Board and committee structures and decision making process could meet NSGC’s future goals. This work actually began several years ago and the current board built upon that foundation. The work accomplished by the Board resulted in changes to the size and composition of the Board of Directors, the nominations and elections process, the existing committees and their make up and the process by which members involve themselves in NSGC projects and activities. The Board also clearly defined the roles and responsibilities of Board members, committees, volunteers and staff and established a framework for developing future leaders for our organization. These changes will allow NSGC to continue our high level of responsiveness to our members’ needs, help NSGC meet our strategic initiatives in a nimble and timely fashion, and continue our tradition of strong volunteer involvement and leadership. In addition to these governance changes, NSGC has enhanced many of its current membership benefits and will continue to expand these offerings in the years to come. Read more about the recent governance changes of NSGC.

Strategic Initiative Three
Our third strategic initiative is to position genetic counselors as key players in the integration of genetics across the healthcare spectrum. In June 2007, the NSGC Board of Directors went through a professionally facilitated branding session. This session was identified as being vital to the success of NSGC in our strategic planning discussions in August of 2006. The branding session helped pinpoint physicians as the target audience that NSGC should initially target with our value proposition messages. Many additional exciting things will come out of NSGC’s branding, so stay tuned!

NSGC Leadership/Volunteer Development
NSGC has a very strong tradition of membership volunteerism at all levels of the society. It is very important to continue this tradition, and we would like to help ensure that members have a rich and rewarding experience. NSGC launched its Leadership/Volunteer Development Program at the 2007 Annual Education Conference in Kansas City, KS. In addition to this program, a new Leadership/Volunteer Development portion of the NSGC Web site was developed that includes a growing Leadership/Volunteer Resource section. These resources are available for all NSGC members in the effort to enrich each volunteer experience.

NSGC is developing and maintaining a comprehensive database of members who are interested in volunteering with the society. There are many special projects, task forces and additional work that NSGC needs help with. In order to ensure that a variety of members are given the opportunity to share their skills, the Volunteer Database will be a valuable resource for leaders to tap into and for current NSGC leaders to identify and help develop NSGC's future leaders. The most effective way for members to get involved with NSGC if they desire is by self identification. While NSGC leaders will continue reach out to members who have known expertise or time for special projects, the Volunteer Database will be the primary resource for leaders to utilize. In order to make sure that your name is included in the Volunteer Database please fill out the Willingness To Serve Interest Inventory form and return it to the NSGC Executive Office.

Education
This past year held many educational opportunities, namely the 26th Annual Educational Conference and Short Course held in Kansas City, Missouri. We had 1,120 members and 59 non-members join us this year for the AEC and Short Course. This year also marked our first advance session which was very successful with 115 individuals attending! We had a wonderful partnership with Society for Advancement of Chicanos and Native Americans (SACNAS) and those members who were able to attend thoroughly enjoyed the experience. 2007 also held successful conferences for Region I, Region II, Region IV and Region V. The Region V conference was held in an online-only format, demonstrating a new and exciting way that education can be shared.

The CEU Workgroup, consisting of Nancy Callanan, Sue Schmerler, Brenda Finucane, Alicia Parlanti Madison, Helen Travers and Juliann Stevens McConnell, completed the application and necessary supporting materials for NSGC to become an accredited CEU provider through the International Association of Continuing Education and Training (IACET). In 2005, the American Board of Genetic Counseling requested that NSGC take over administering CEU’s. The decision was made to do this independently of the American Counseling Association in order to be able to offer CEU’s for more diverse types of educational opportunities. After much hard work, NSGC will be able to approve educational activities for CEUs and provide CEUs to genetic counselors, beginning in 2008!

In our most recent membership survey, respondents indicated that NSGC's educational offerings are one of the most important member services. To ensure that we are able to offer state of the art, up-to-date programs, the NSGC Board of Directors has included this in the current strategic plan. As our profession grows and becomes increasingly specialized, our commitment to providing relevant education for genetic counselors must be flexible to meet everyone’s needs. In order to evaluate the opportunities that NSGC is currently offering and to discuss new and future opportunities, an Educational Planning Summit was held in July 2007. The work accomplished at this summit will be developed in 2008 for implementation in 2009 and beyond! NSGC will be continuing to develop strategies to improve current and implement new education offerings.

Journal of Genetic Counseling
The Journal of Genetic Counseling continues to grow in size and submissions. Between October 1, 2006 and September 30, 2007 the JGC editorial office received over 200 submissions; international submissions accounted for approximately half of this year’s submissions. In October 2007 the content for June 2008 was being filled. A special issue entitled Implementing Genetics in Health Care Practice and Education is being edited by Clara Gaff, Janet Williams and Joe McInerney. This issue will be published in April of 2008; publication of this issue is timed to correspond with the National Coalition for Health Professional Education in Genetics meeting in order to maximize exposure. The dedication and accomplishments achieved by Editor-in-Chief Allyn McConkie-Rosell and Managing Editor Jennifer Sullivan have been a substantial reason for the growth and increased authority for the JGC. I would like to extend a special thank you to Allyn and Jennifer for all of their hard work, and introduce our incoming Editor-in-Chief for 2008, Bonnie LeRoy and incoming Associate editor, Pat McCarthy-Veach.

Additional Accomplishments
NSGC and its members have so many accomplishments throughout the year it is hard to keep track! Some additional highlights from this year include:

• Partnership with Kartemquin filmmaker and producer Joanna Rudnick for the upcoming feature documentary In the Family, an exploration into the emotional reality of predictive genetic testing for adult-onset diseases
• Revision and approval of the Scope of Practice statement
• Board approval of the Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer and Neurofibromatosis Type 1 in Genetic Counseling Practice guidelines
• Board approval of a Direct to Consumer Genetic Testing Position Statement
• Mechanisms for charter state chapters were developed

In addition, the NSGC Finance Committee and Board continue to work to ensure the financial stability of our organization. NSGC has healthy reserves, however we are currently investing in several initiatives, including our legislative advocacy efforts to secure billing and reimbursement. While these are exactly the type of activities for which we built our reserves, we want to ensure that we have the resources to continue to make strategic investments in the future. As a result, the Finance Committee and Board have been looking at NSGC’s financial growth, focusing on developing sources of non-dues revenue. While member dues will always be a major source of support for our organization, we recognize the need to obtain funding from a variety of sources, as well as continue to develop new programs and services that meet the needs of our members and other members of the healthcare community and general public. You will see changes in current programs and the development of new programs in 2008 and future years to help accomplish both of these goals and ensure that NSGC remains a financially strong organization in the years to come.

NSGC continues to grow and evolve! We have experienced many changes that will ultimately make the profession and our society stronger. I hope that everyone will continue to support these changes and actively participate in the growth of our organization. The success of NSGC and the success of the genetic counseling profession go hand in hand. I graciously thank the Board of Directors and all of our members for their vision and diligence as NSGC evolves. It has been my honor and pleasure to serve as the NSGC President.

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