2008 Annual Report

President's Report

The year of 2008 will forever be a notable one because of the passage of the Genetic Information and Nondiscrimination Act (GINA). Also notable was the increasing availability of direct-to-consumer (DTC) genome scans. In fact, Time Magazine named the (23andMe) retail DNA test the 2008 Invention of the Year. Both generated a considerable amount of media attention upon which NSGC was able to capitalize via our public relation efforts (see the Public Relations Report). In addition, the commercial availability of genome scans resulted in national forums to discuss the implications of direct-to-consumer testing, the current clinical utility of genome wide scans, and the level of evidence needed to support the integration of genomic testing into medical management strategies. NSGC took part in several of these forums, working to position genetic counselors as the experts ideally suited to contribute to policy discussions and to assist healthcare providers and consumers in understanding the implications of genomic testing.

Strategic Direction & Initiatives

In any given year, the work of NSGC is driven by our strategic plan. The year of 2008 marked the second year of our 2007-2009 Strategic Plan. The strategic initiatives in this plan are as follows:

Strategic Initiative One (SI 1): Expand access to genetic counseling services by actively pursuing reimbursement for Certified Genetic Counselors. This initiative includes pursing federal legislation recognizing genetic counselors as health care providers, supporting state licensure efforts, and developing relationships with third party payers to encourage recognition of genetic counselors as billable providers.

Strategic Initiative Two (SI 2): Promote an organizational culture that will enable NSGC to adapt to evolving needs of genetic counselors. This includes engaging the membership to ensure that the leadership understands and meets their needs through inclusiveness, resource deployment, effective communication, and high quality education; evaluating and restructuring NSGC’s governance system; and meeting the needs of the members in relation to increasing specialization.

Strategic Initiative Three (SI 3): Position genetic counselors as key players in the integration of genetics across the healthcare spectrum. This involves developing a value proposition statement to be used to promote the profession; monitoring trends in the profession, healthcare field and society to determine how to respond to those trends; and pursuing partnerships and activities that support the mission and vision, enable genetic counselors to take part in policy discussions as well as legal and social issues; increase the visibility of the profession; and identify and promote the cores skills of genetic counselors to support development of new professional roles.

Governance
In 2008, the changes in governance structure that were adopted in 2007 were implemented (SI 2). In brief, the NSGC now has a 12 (versus 19)-member Board of Directors. The Board consists of a president, president elect, immediate past president, secretary-treasurer, secretary-treasurer elect, and 7 at-large Board members. Board members are selected via ratification of an uncontested slate of candidates who are identified through an open nominations process. In the first year of this Board selection process, 62 nominations were submitted representing 44 individuals. Twenty-eight individuals agreed to be considered and a slate of 6 were selected by the nominating committee and presented to the membership for ratification.

Other governance changes include establishment of five standing committees, each led by a chair and vice chair, and appointed committee members. . We established an NSGC Leader-Volunteer Database in which those interested in volunteering can submit a willingness to serve form. This database was accessed to identify volunteers for 13 different projects in 2008 and over 20 volunteers were selected directly from the database. We anticipate the utilization will grow in 2009 since many of the 2008 committee member positions were filled in late 2007 prior to implementation of the database.

Also new in 2008, the Board developed and approved a Board Culture Statement which describes the expectations, values and beliefs of Board members with regard to governance of the society.

The Governance Task Force began the process of evaluating the effectiveness of these governance changes in 2008. The Nominating/Governance committee will continue the evaluation process moving forward.

Government Relations
With regard to our federal legislative goal (SI 1), the NSGC Board and staff made a strategic decision to focus our government relations efforts on GINA before identifying sponsors for on our own bill. In the first 6 months of 2008, the NSGC, through its Government Relations staff, Public Policy committee, membership in the Coalition for Genetic Fairness (CGF), Hill visits and grassroots network, actively took part in the process that led to GINA passing. To all of you who called, wrote or visited your representatives and senators, you made a difference! This sort of grassroots advocacy will be critical as the NSGC moves forward in its effort to introduce a federal bill that would have the Centers for Medicare and Medicaid Services recognize genetic counselors as healthcare providers.

Once passed, the next step for GINA was to write the regulations. The Departments of Labor and HHS issued a request for information about specific sections of GINA that apply to employment-based health coverage, individual market health insurance, and Medicare supplemental (MedSupp or Medigap) coverage. The Johns Hopkins Genetics and Public Policy Center did a model response for the CGF. NSGC signed on to these comments as a member of the CGF steering committee.

After GINA passed, the NSGC staff ramped up efforts to identify a sponsor for our federal recognition bill. However, the November elections and economic state of the country made finding a sponsor challenging. Therefore, we will continue with these efforts into 2009.

The Government Relations Staff and Licensure Subcommittee assisted several states in their licensure efforts (SI 1). The NSGC awarded licensure grants to Hawaii, Florida and Washington State.

Additional details regarding government relations efforts are available in the Legislative Advocacy Report below.

Mission and Vision
An organization’s mission defines what it is doing, whereas its vision defines what it wants to become. In recognizing that the NSGC and the genetic counseling profession are evolving, the Board of Directors evaluated the existing mission and vision statements to assess whether they still reflect the current work and future goals of the organization (SI 2 & 3). After considerable Board discussion, member comment, and external stakeholder review, the Board approved a new mission statement (below).

The National Society of Genetic Counselors advances the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services.

The Board also concluded that the NSGC vision, “To be the leading voice, authority, and advocate for the genetic counseling profession” needed to be updated, as the stated goals have already been met. However, before developing a vision, the Board decided to address some specific questions including, “What will the genetic landscape look like in the future?” “What will this mean for the practice of genetic counseling?” “What will the NSGC need to do to prepare our membership?” To answer these questions, the organization conducted a series of focus groups with representatives from several organizations (e.g.., NHGRI, CDC, HRSA, ISONG), external stakeholders, and genetic counselors. In conjunction with a 2009 membership survey, the information obtained from these groups will be used to set the stage for developing a new vision statement and in preparing for both short term (3 year) and long term strategic planning.

Education
The NSGC recognizes that continuing education opportunities are an important member benefit and integral to our mission, and continues to work to enhance our offerings to meet the needs of an increasingly diverse membership (SI 2). In 2008, our offerings included the following:

• The 27th Annual Education Conference, held in Los Angeles, CA. The conference was preceded by a cardiovascular genetics short course. The combined attendance was 1,418. For the first time, conference sessions were recorded and available for purchase so that non-attendees could have access to the content, and attendees could view sessions they were not able to attend.
• NSGC held a traveling short course entitled, “Survival Skills for the 21st Century: How to Shape Your Future” in Cleveland, Ohio, Costa Mesa, California, and Philadelphia, Pennsylvania (immediately prior to the ASHG meeting). A total of 221 individuals attended
• Given the success of the Region V online conference in 2007, NSGC offered its first full scale online course in the summer of 2008. Two hundred ninety five people took advantage of this opportunity.
• The NSGC continues to offer the Journal of Genetic Counseling Continuing Education opportunity. In 2008 317 people participated in this program.

Also notable in 2008, the NSGC received approval from the International Association of Continuing Education and Training (IACET) as a provider of continuing education units for genetic counselors in 2008. ABGC transitioned the CEU approval process to NSGC in April. In 2008, 38 Category 1 and 205 Category 2 applications were reviewed.

Liaison Activities
The NSGC is actively involved in evaluating existing partnerships and activities and pursuing new ones that will enable genetic counselors to contribute meaningfully to policy discussions and that will increase profession’s overall visibility. Below is a summary of partnerships/activities that took place during 2008.

Presentations

• Angela Trepanier participated in the American College of Medical Genetics strategic planning meeting in February 2008, presenting on NSGC’s strategic initiatives and the need for ACMG support on SI 1 (federal recognition and licensure) and opportunities for collaboration (SI 3).
• Past President Cathy Wicklund is serving as the NSGC representative on the Institute of Medicine Roundtable on Translating Genomic-Based Research. The overall goal of the roundtable is to bring together leaders from academia, industry, government, foundations, associations and representatives of patient and consumer interests who have a mutual concern and interest in addressing the issues surrounding the translation of genome-based research for use in maintaining and improving health. Cathy attended three workshops in 2008 and had an active role in the planning the July workshop that addressed “Innovations in Service Delivery in the Age of Genomics.” Debra Lochner-Doyle, Vivian Ota Wang, Heather Shappell, Elissa Levin and Cathy Wicklund all presented at this workshop. Cathy is currently serving on a workgroup that is evaluating the future goals of this IOM Roundtable. Additional information is available at http://www.iom.edu/CMS/3740/44443.aspx.
• On July 7th, 2008 Angela Trepanier participated in a Department of Health and Human Services-sponsored workshop entitled, “Understanding the Interest and Needs of Consumers in the Use of Genomic-Based Health Information Services.” She took part in a panel that addressed what is currently useful to consumers, and what can they expect in the future. More information is available at http://www.webconferences.com/hhs/.
• At the Genetic Alliance Annual Conference in July, Angela Trepanier conducted a workshop with “In the Family” producer Joanna Rudnick on the topic of exploring issues in pre-dispositional testing.
• On July 14th, 2008, Scott Weissman and Angela Trepanier attended the American College of Surgeons Commission on Cancer (COC) conference, “Coming Together 2008: A National Forum on Cancer Care in the United States.” Scott is the NSGC liaison to this group and was a member of the planning committee. He organized and moderated a break out session in which Angela presented on the topic of addressing challenges to access and support for cancer genetics services.
• Angela Trepanier was invited to present at a workshop held December 17-18, 2008, entitled, “Personal Genomics: Establishing the Scientific Foundation for using Personal Genome Profiles for Risk Assessment, Health Promotion and Disease.” The meeting was co-sponsored by the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), the National Human Genome Research Institute (NHGRI), The Office of Behavioral and Social Sciences Research (OBSSR), and the National Heart, Lung and Blood Institute (NHLBI). Workshop participants presented on the scientific basis for the use of genome profiles in risk assessment and disease prevention, identified gaps in knowledge and explored how those gaps can be filled through research. The proceedings, including all presentations are available at http://cancercontrol.cancer.gov/od/phg/workshop.html. Angela is working with the group to publish the proceedings.

Representation

• Angela Trepanier participated in the American Association of Family Physicians Subcommittee on Genomics Meeting in January 2008. The group discussed approaches to integrating genomics into their practice.
• Angela Trepanier represented NSGC at the NIH Population-Based Carrier Screening Meeting in February 2008. Details about this conference are available at http://www.genome.gov/27026048.
• Steven Keiles and Meghan Carey attended the CDC-sponsored Hereditary Hemorrhagic Telangiectasia Health Initiatives for the 21st Century conference in March 2008, and also met with representatives from the CDC Divisions of Laboratory Practice and Reproductive Health.
• Angela Trepanier, Steven Keiles, and Meghan Carey attended the American College of Medical Genetics meeting in March 2008 and had the opportunity to meet with leadership from ACMG, ABGC and the Genetic Alliance to discuss collaboration and coordination of efforts.
• NSGC participated with NHGRI, ACMG, ASHG, ISONG and the Genetic Alliance in planning for educational activities for DNA Day 2008.
• NSGC took part in quarterly conference calls with the Association of Genetic Counseling Program Directors and the American Board of Genetic Counseling to discuss shared issues and develop plans to address them.
• Kristen Shannon, NSGC liaison to the Health Professions Network, attended their spring conference in April 2008.
• NSGC liaison Wendy Uhlmann attended the National Advisory Council for Human Genome Research (NACHGR) meetings in May and September, 2008.
• Scott Weissman attended the American College of Surgeons Commission on Cancer (COC) meeting in May.
• Angela Trepanier attended an outreach summit for the film, “In the Family” in July. Based on the outcome of this summit, NSGC and the Cancer SIG arranged a showing of the film at the NSGC Annual Education conference and worked with Kartemquin to offer an “Ask a Genetic Counselor” email and discussion forum for a week following the airing of the film. NSGC also participated in a number of community forum events held in Chicago.
• In July, Angela Trepanier, Steven Keiles, Public Policy chairs Barbara Harrison and Diane Baker, and several other genetic counselors participated in the Genetic Alliance’s Day on the Hill where they were able to meet with Congressional staffers to thank them for their support of GINA and to garner interest in NSGC’s plan to introduce federal legislation that recognizes genetic counselors as Medicare health care providers.
• Angela Trepanier, Steven Keiles, and Meghan Carey also attended the Genetic Alliance conference entitled “Transformational Leadership”. The conference provided an opportunity to interact with and hear the perspectives of a wide variety of advocates as well as governmental agency representatives and genetics professionals.
• During the Genetic Alliance conference, Angela Trepanier, Steven Keiles, and Meghan Carey had the chance to meet with Alan Guttmacher, MD, Deputy Director and Acting Director of NHGRI.
• NSGC liaison Andy Faucett participated in two EGAPP Stakeholders Advisory Group meetings held in January and July.
• Angela Trepanier attended the NCHPEG (National Coalition for Health Professionals Education in Genetics) conference in September. In her role as NSGC representative, she has been elected to the NCHPEG Board of Directors for a three-year term beginning in 2009.
• Angela Trepanier attended the third annual NHGRI-sponsored Physician Assistants and Genomic Medicine meeting held September 2008 Representatives of the American Academy of Family Physicians (AAFP), the American Association Colleges of Nursing (AACN), the American College of Medical Genetics (ACMG), the National Coalition for Health Professional Education in Genetics (NCHPEG), were also in attendance. As a result of this meeting, Angela is participating in an advisory group that is developing a web portal for genetics curricular materials to support the integration of genomics into the curriculum of students in physician assistant and nursing programs.
• NSGC and the Genetic Alliance offered the Advocates Partnership Program at the NSGC Annual Education Conference. Five advocates and numerous NSGC volunteers participated in the program that is aimed at increasing partnerships between advocates and genetics professionals.
• Angela Trepanier, Steven Keiles and Meghan Carey attended the American Society of Human Genetics Meeting in November 2008. While there, they took part in meetings with the International Federation of Human Genetics Societies and ACMG.

Other Liaison Activities

• The government relations staff worked with the Cancer SIG to appeal a Medicare coverage decision made by Noridian, the Medicare administrator in many western states. NSGC made an evidence-based recommendation for three revisions to the coverage decision. Noridian accepted two of NSGC’s recommendations and NSGC is pursuing clarity on the third revision.
• The NSGC drafted comments regarding potential future priorities for the Secretary’s Advisory Committee on Genetics, Health, and Society.

2008 NSGC Task Forces

• The Genetic Counseling Foundation Transition Task Force (TTF) was convened jointly by the NSGC and the Genetic Counseling Foundation Board of Directors to develop a plan to implement the recommendations of a previous GCF Task Force related to restructuring the Foundation. The TTF successfully developed a new mission statement, budget, and staffing model, revised the GCF bylaws, and made recommendations regarding a new slate of Directors for the GCF. These changes were approved by both the NSGC and GCF Boards and have been implemented.
• The Organizational Cultural Competency Task Force (OCC) was convened as part of Strategic Initiative 2 to assist NSGC in becoming a more inclusive organization. Specific charges included developing a vision statement regarding cultural competency, assessing the current climate of the organization, creating a strategic plan for continuing education in cultural competency for members, volunteers, leaders, and staff, and developing a means for evaluating the effectiveness of these strategies. The work of this task force is ongoing.
• The Research Task Force (RTF) was convened to identify and prioritize what research needs to be done to support billing and reimbursement (SI 1) and the value of genetic counseling (SI 3). The RTF completed its charges and its recommendations have been approved by the NSGC Board of Directors. The work to implement the recommendations is ongoing.
• The Core Skills Task Force (CSTF) was convened to identify the fundamental and emerging skills of genetic counselors and to make recommendations for the continued development and promotion of these. The ultimate goal is that this will support the development of new professional roles (SI 3). The CSTF began its work in late 2008 and will complete its tasks by February 2009.
• The Governance Evaluation Task Force (GETF) was charged with evaluating the changes in governance structure including the new nominations process, election/ratification process, board structure and function as well as committee structure and function, utilization of member volunteers, and the volunteer experience. The GETF completed its work in 2008 and submitted a final report to the Board of Directors. The Nominating/Governance Committee will continue the evaluation process.

Additional Activities

• Under the leadership of Maureen Smith and Mary Freivogel, the NSGC completed the 2008 Professional Status Survey. The survey included changes in formatting to make it easier to complete for those in non-clinical roles. The response rate was 71%, which was up from 68% in 2006. The results are now available in the Members’ Only section of the NSGC website.
• Under the leadership of the Membership Committee, the NSGC rolled out its new categories, criteria and selection process for the Leadership Awards. Sixty-one nominations were submitted representing 46 individuals. The list of honorees and their acceptance speeches are included below. Congratulations to those who were recognized this year!
• In response to increased marketing efforts to primary care physicians and media attention regarding cancer genetics services, the NSGC Communications Committee and the Cancer SIG worked together to develop a new Providers’ Section of the NSGC website. The goal is that additional SIG’s will produce materials for this section in the future and that this will be viewed as a resource for those in primary care.
• The NSGC Practice Guidelines Subcommittee developed a system to recommend current or emerging issues to the Board for development of future guidelines, as well as a new process for development of guidelines.

Executive Office
The year of 2008 also marked a change in our executive office leadership. In January, executive director, Kristen Smith, stepped down from her position to spend more time with her family. The NSGC Board of Directors, with our management company, SmithBucklin, conducted a search, and selected Meghan Carey as our new executive director. Meghan has worked with NSGC since 2005 as the senior manager. She is currently serving as executive director for both NSGC and the Genetic Counseling Foundation.

As you can see, 2008 was a very interesting and productive year! The NSGC could not have accomplished this much without the energy, enthusiasm, and engagement of its member volunteers and its executive office staff. Thanks to all of you who contributed your time and expertise. You are all making a difference in the future of our organization and our profession.

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