Wednesday, December 29, 2010

Closing a chapter

My chapter of the NSGC President’s blog began with my New Year’s wishes to the NSGC membership, so it seems appropriate to close with New Year’s Eve reflections. I am happy to say that most of our plans came to fruition: a new vision statement, a new website, advancement of state licensure (congratulations California and Delaware), the 2010 Professional Status Survey, initiation of a leadership development plan for NSGC members, and an AEC with record attendance. Of course there were surprises, as
I hadn’t expected to testify for the FDA or for the NSGC to receive national attention due to over-the-counter genetic testing kits at Walgreens!

I remember thinking privately when I began my President Elect year in 2009, “How will I have enough time to have an impact?” What I didn’t completely appreciate yet was how the NSGC’s strategic plan keeps the organization focused and moving forward during its planned, frequent transition of leadership. I simply needed to follow the plan as previous presidents and boards had done, and we could be assured of success. It wasn’t actually about me but about all NSGC volunteers working together toward common, identified goals.

And now it is time for President Elect Karin Dent to lead. Having worked closely with Karin on NSGC activities now for the past year, I can tell you that she is an open-minded, positive individual with great vision and passion for the genetic counseling profession. I’m so excited that the NSGC’s next president is a leader who is a pediatric genetic counselor at an academic medical center. With her grounding in the roots of our profession and her optimistic vision for the future, she represents both where we have been and where we will go. I know you will find her to be an inspiring leader. I do.

And so it is time for me to close this chapter of the NSGC President’s Blog. Thank you, NSGC. I’ve had the time of my life.

Wednesday, November 10, 2010

Get involved in NSGC – start by joining a SIG!

By guest blogger Karin Dent, NSGC President Elect.

Hello Everyone! I would like to take this opportunity to introduce myself to you. My name is Karin Dent and I am President-Elect of NSGC. I graduated from the University of Pittsburgh Genetic Counseling Program in 1998. Since then I have been employed at the University of Utah Department of Pediatrics. My involvement with NSGC began as a member of the Pediatrics SIG in 1998 and continued for several years. To me the SIG was a group of experts I could turn to for professional advice and guidance as I was finding my place in the pediatric counseling world. It was exciting to be a part of a group of colleagues who were interested in many of the same issues as me.

For many years the SIGs have continued to be a great place for NSGC members to become involved in their professional organization. SIGs provide opportunities for networking, professional development, and development of leadership skills. The number of SIGs has increased significantly over the past 10 years, and as a result the volunteer opportunities available to NSGC members continue to grow. Several times the NSGC has turned to SIGs for expert advice in their specialties or areas of interest. And we should be utilizing the SIG expertise even more. The SIGs are uniquely qualified to educate and update their members as well as the general NSGC membership on cutting edge science and technologies, as well as identifying emerging trends in specialty areas.

We have created a plan, called the SIG Enhancement Strategy and Implementation Plan, to further utilize the unique abilities and resources that exist in SIGs, promote and develop their leadership, and enhance the SIGs’ contributions to NSGC and our profession as a whole. This plan was developed by NSGC leaders as well as a SIG Governance and Enhancement Strategy Task Force that consisted of four SIG chairs (Leigha Senter, Cancer SIG; Martha Dudek, FIT SIG; Jessica Mester, Pediatrics SIG; Emily Edelman, Personalized Medicine SIG) representing various-sized SIGs and years of establishment. In addition, Sheetal Parmar, NSGC Membership Committee Chair, represented the interests of the NSGC general membership. The purpose of the SIG Enhancement Strategy and Plan is to ensure the expertise and resources within NSGC’s SIGs are being translated to the general membership, develop additional leadership opportunities within the SIGs, and further increase the value of SIGs to NSGC members and the genetic counseling profession.

The SIG plan will be discussed in detail on a call with the SIG Chairs on November 18. Some highlights of the plan include:

- The assignment of annual charges to all SIGs. These charges will help guide the SIGs in developing their education goals, contributions to NSGC’s strategic plan, and in providing benefits to the SIG members.

- Increase of the minimum number of individuals required to establish a new SIG to 15. A potential new SIG with fewer than 15 individuals may choose to start as a subgroup under a larger umbrella SIG. This would allow that group time to recruit additional members, develop projects, and foster leadership development and mentoring by the umbrella SIG chairs.

- Annual self-evaluation. This will help SIGs assess their progress over the year and assist them with setting their goals and objectives for the following year.

- SIGs will be led by a Chair and Vice-Chair in which the Vice-Chair becomes Chair the following year. This staggered governance structure will allow continuity of leadership and streamlined transition in leadership and strategic projects.

2011 will be a transition year for the NSGC SIGs as we implement this plan. If you are looking for a way to get involved with NSGC, consider starting with a SIG. You may find a collaborative group of experts who share similar professional interests. You may be able to work on a task force, create an educational program for the organization, network and develop leadership skills, and most importantly, share your expertise with the entire organization.

I am looking forward to leading our great organization in 2011. I am excited to meet and get to know more of the many wonderful genetic counselors who make up our diverse society.

Thursday, October 28, 2010

Reflections on the AEC: Patients as our Teachers

At the NSGC’s recent conference in Dallas, I had the opportunity to meet with several participants in the Genetic Alliance’s Advocates program, through which patients, professionals, students and others from outside the genetic counseling profession are invited to apply for sponsorship to attend the NSGC’s annual conference and observe what genetic counselors are learning.

I quickly realized that the counselors, often in the role of educating patients, had become the students. The Advocates had many suggestions for us. They liked the sessions where patients’ perspectives were shared, such as the Rollnick lecture where Ian Brown spoke about how his son’s disabilities had taught him the value of the simplicity of human connection or the poignant story about different expectations of access to Canavan testing due to gene patenting. However, they commented that patient viewpoints should be integrated into our education as a conversation rather than as a separate voice brought in to lecture.

We spoke also about the need to translate. Medical professionals often use the phrase “dumbing down” when referring to how they present information to patients. I’m sure many of the readers of this blog will recoil at the phrase, yet do we think proactively about translating rather than simply explaining? Or integrating genetic information into the other factors of a patient’s life? Patients experience with genetic disease is different from ours. We have no more right to impose our language upon them as they do to dismiss our perspective as a professional.

The Advocates shared that they would like to be able to more easily find genetic counselors within the specialty areas for research purposes, for individual counseling and other reasons. They want to partner with us to advance progress in understanding the genetic etiology of disease. (We even spoke briefly about the new Find-a Genetic-Counselor tool on www.nsgc.org, which allows a search not just by geographic area but by specialty. However, even advanced search tools are only as good as the data they search, so I’m going to take this opportunity to remind you to update your profile – all four tabs. Login and click the “update my profile” link in the top right-hand corner.)

I extend my thanks to the Genetic Alliance for its coordination of the Advocates program and challenge us all to think about how we can partner with patients to better educate ourselves to serve them better.

Thursday, October 7, 2010

NSGC launches new website!

On October 4, 2010, I woke up feeling like a five-year-old kid on Christmas Day. But instead of rushing downstairs to tear open the presents under the tree, I rushed to my computer, logged on, and typed www.nsgc.org into my browser. And there it was…our new website! I guess my priorities have changed since I was five.

Of course, I’d seen the production site numerous times over the last month as our committed Executive Office team and volunteers from the Communications Committee’s Website Task Force made incremental improvements to the artwork, navigation, and messages on the site. But there was nothing like seeing it go live for the first time knowing that I can now proudly refer doctors, patients, the media, policymakers, payers, prospective members, students – you name the audience – to the NSGC website.

The website is a big step toward implementation of our branding effort, which I have written about many times in this blog beginning with my guest entry in September 2009. (see below) Therefore, while the website will serve multiple audiences, the focus is on physicians, who are the primary gatekeeper for patients to learn about genetic counselors’ services. The NSGC leadership believes we can best serve our members by promoting the profession and encouraging doctors to refer patients to genetic counselors.

However, I’m excited to tell you about the enhanced benefits the website will offer members! The crown jewel among these is the Find-a-Genetic-Counselor tool, which allows you to search the entire NSGC membership database by partial name, geography, type of specialty, work setting, zip code, etc. Members can also email each other directly using the directory search. The tool is updated daily to include recent new members and information updates you make to your member profile. Keep in mind that if you opt to exclude your information from the public listing, members will have to be logged into the website in order to find you. You can find additional information about updating your profile and how to use certain features of the site at http://www.nsgc.org/MemberCenter/tabid/66/Default.aspx .

The NSGC will also to continue to improve upon the site from the version we have right now. Over the next few weeks, the NSGC Communications Committee and Executive Office invite your feedback. They will review all the feedback collectively after the AEC to prioritize additional changes to make. We ask for your patience while we collect the feedback in order to use our resources as effectively as possible. As always, feedback or questions about difficulties can be emailed to nsgc@nsgc.org or by calling the Executive Office at 312-321-6834. The Executive Office is ready to answer personalized questions that you have, and volunteers will be staffing the NSGC booth at the AEC to help familiarize you with the site. Most of our members’ concerns have been quickly resolved once they call, so we encourage you to do so.

I’m looking forward to seeing many of you at the AEC next week in Dallas. In the mean time, please visit www.nsgc.org and see you in cyberspace!

Friday, September 17, 2010

Leadership

Many times in this blog, I have commented on how important leadership is for genetic counselors. We are a small profession. We don’t have the luxury of sitting back and letting others forge the path for the rest of us to follow. We all need to find ways to be leaders whether it is through the NSGC, our own institutions, or our own communities.

I recognize that not every genetic counselor has the confidence or the experience to begin leading. Some of you might be wondering “where do I even start?” If that question resonates with you, you will be glad to hear that the NSGC will begin creating a leadership development program in 2011. The details will be determined by the 2011 Membership Committee, but the proposed objectives are to empower our membership with leadership skills to become effective leaders in their own careers, the profession, and the NSGC. We hope to leverage the advanced skills of some of our more senior members to mentor others.

However, you don’t have to wait! There are many opportunities right now to start building leadership skills; the NSGC has always provided these opportunities as a benefit to its members. I started out helping to plan one session on marketing at the AEC in 1998. At the time, I knew very little about marketing, but my role was solely to identify some good speakers to contribute and coordinate the event. I remained involved with the AEC every year in one capacity or another, meeting genetic counselors across the nation and learning valuable project management skills. In 2002, I ran for an NSGC Board position and, to my surprise, won. I have no doubt that the network I had developed through my prior NSGC roles contributed to that opportunity. Serving on the NSGC Board from 2002-2004 gave me exposure to strategic thinking and great mentors as well as allowed me to enhance my project and team management skills in coordinating a regional meeting. The experience led to my decision to return to business school to enhance my leadership skills. I can’t help but wonder how much my first NSGC experience coordinating a marketing session contributed to my choice. It has all come full-circle.

Members often tell me that they don’t know how to get involved. I encourage you to start contacting NSGC leaders now. Some key resources are Committee Chairs and SIG Chairs, but Board members can also help direct you to the right person. You can find a list of these leaders on the NSGC website under the “About Us” tab under “Society Leaders” at http://www.nsgc.org/about/Whos_Who_2010.cfm.

Be assertive. Don’t just send one email and then drop it if you don’t get a response. Pick up the phone or email again. Everyone is busy, but all NSGC leaders are willing to help you navigate to the right position for you. And remember, a true leader doesn’t wait for someone else to take charge of his or her own career.

Tuesday, August 24, 2010

The other side of access: service delivery models

As I have written many times in this blog, expanding access to genetic counselors is a top initiative of the NSGC. Many of you realize that there are multiple potential barriers to patients who may benefit from talking with a genetic counselor. We have several initiatives pending to improve coverage of genetic counselors’ services (including the initiative I wrote about July 23, 2010), but we also have a task force dedicated to identifying different ways patients can access genetic counselors. The NSGC “Service Delivery Model Task Force”, led by NSGC member Stephanie Cohen, is attempting to identify existing methods genetic counselors use to communicate with patients, such as face-to-face or telephone counseling.

Although the most common models counselors use to communicate with patients are probably face-to-face and telephone-based genetic counseling, there are other models that exist including videoconferencing, internet-based, and face-to-face group counseling. There may even be some novel methods that most genetic counselors don’t realize are available or effective.

Many genetic counselors prefer to provide face-to-face genetic counseling for a variety of reasons including better communication of complex concepts and ease of psychosocial assessment. However, any genetic counselor who has practiced for a significant amount of time knows that there are always some patients who can’t take advantage of face-to-face genetic counseling. Sometimes patients live in a rural area without a genetics service within reasonable driving distance. Other times, a patient’s work schedule does not allow him or her enough time for an in-person appointment during work hours. Some patients may just simply not understand how a session with a genetic counselor will help them but would be open to an exchange over the phone or email to learn about how they might benefit. All of these are reasons why genetic counselors should consider other methods for delivering their services.

We also need to evaluate delivery models from different points of view. It is obviously important that patients be able to reach genetic counselors through a proposed delivery model, but we also have to think about efficiency. How long do patients have to wait for a particular method of delivery? What factors contribute to that wait time? How are different delivery models reimbursed? These are all critical questions to determine whether a delivery model will truly increase access.

In addition to how genetic counselors communicate to patients, there are also different modes through which patients are referred. Most of us think of the individual physician referring the patient to a local genetic counselor, but some physicians work with genetic counselors in laboratories or at a genetics center to help them triage patients to determine which patients need to meet personally with a genetic counselor. Both referral models and counseling delivery models are important to understand if we want to find efficiently collaborate with other health care providers.

The Service Delivery Model Task Force needs your help! Please take 10 minutes to complete a survey: http://www.zoomerang.com/Survey/WEB22AYQ94SBFE. The survey includes questions that address all of the points above, and the Task Force can’t start its work without input from NSGC members in the trenches. Please help us move forward on this important initiative.

Tuesday, August 3, 2010

FDA Oversight of Genetic Testing

Many NSGC members are aware of the public meeting the FDA held on July 19-20 to gain input from stakeholders about oversight of laboratory-developed tests (LDTs). I was proud to represent the NSGC and excited to hear the many positive references made to the role of genetic counselors. I want to share some highlights from the meeting.

The meeting opened with an overview by FDA officials of the history of oversight of LDTs, which they defined as tests designed, manufactured, and utilized by a single lab. (Some of you may recognize the term “home brew”, which has clearly fallen out of favor!) Obviously, there are many types of tests in the LDT category, but genetic tests are one type. The FDA has practiced “enforcement discretion” over LDTs historically because most LDTs were performed by hospital-based labs with small test volumes and close communication between the lab pathologist, clinician, and patients. Over the last two decades, the environment has changed. The volume of LDTs has increased dramatically, and LDTs are offered and marketed by large-scale commercial labs with less communication with the ordering clinician and the patient. There is also an increase in use of accompanying complex software and multiplex testing and more emphasis on predicting disease rather than diagnosing disease based on symptoms. Therefore, the FDA representatives stated that CLIA oversight of laboratories is no longer sufficient to protect the public, and the FDA has decided to invoke its oversight authority over LDTs.

However, the FDA speakers were careful to state that they have made no final decision in regards to how LDTs will be regulated, and they held the public meeting to seek input from a broad range of stakeholders.

Outside of clinical laboratory professional organizations, the NSGC was one of only two professional associations to present. I presented the NSGC perspective based on the discussions that the Public Policy Committee has had on regulation of genetic testing. While some increased regulation is likely needed to address the expansion of genetic testing into tests for common disease and pharmacogenetics, it will be important for the regulations to maintain access to genetic testing for rare disease or genetic variants affecting small populations. In addition, regulating testing alone will not address the risk of misapplication or misinterpretation of genetic testing results by individuals without specialized training in genetics and counseling.

Many of the stakeholders referenced the value genetic counselors bring to patients and doctors. Two consumer advocacy groups mentioned the value of genetic counselors, and an expert panel on the topic of “Patient and Clinical Implications” discussed that many healthcare providers don’t have sufficient training to interpret many of the new LDTs. The spokesperson for the Ovarian Cancer National Alliance served on the panel and specifically stated that her organization tells patients that they should talk with a genetic counselor prior to genetic testing.
Overall, the meeting was an important one for genetic counselors. The outcome of the FDA’s actions will have significant impact on the practice of genetic counseling. In addition, the NSGC’s presence at the meeting as one of the only professional associations in attendance demonstrated genetic counselors’ commitment to protecting patients and the high standards of the profession.

For more feedback on the meeting, you can review NSGC tweets on Twitter by following NSGC_org. Also, the Public Policy Committee has posted a blog on the House of Representative’s Energy and Commerce Committee hearing on DTC genetic testing and can be found at http://nsgcpublicpolicy.blogspot.com/.

Friday, July 23, 2010

Expanding our reach through collaboration

In the 2009 Vision Survey of NSGC members, respondents rated billing and reimbursement efforts as the top strategic initiative the NSGC should pursue over the next 3-5 years. On federal and state levels, progress is clear with 13 states having passed licensure legislation and many more preparing to introduce bills. We are actively seeking a congressional sponsor to introduce federal legislation to amend the Social Security Act to recognize genetic counselors as providers under Medicare. However, efforts with private payers have been initiated mostly by individual NSGC members, so the time has come to organize a strategic effort to approach private payers to cover genetic counselors’ services.

In our preliminary talks with payers we have encountered two repeated concerns from their leadership, 1. there is limited formal data to demonstrate the importance of covering genetic counselors’ services, and 2. not all of their health plan’s members will have access to a genetic counselor. As a not-for-profit professional association, we have finite resources to address these challenges.

One way to expand our organization’s resources is through strategic partnerships, and there is an organization that has experience and assets in working with payers. In June, The NSGC Board approved a collaboration with Informed Medical Decisions (IMD), which is a for-profit company that offers telephone-based genetic counseling by ABGC-certified genetic counselors. IMD has already had success in writing contracts and policies for third-party payers to cover and, in for some tests, require pre-test genetic counseling prior to authorizing genetic testing.

The NSGC Payer Task Force will lead an effort on the NSGC side to approach third-party payers with IMD to write coverage policies to cover genetic counseling. IMD has agreed to share lessons learned from its own negotiations with payers as well as outcomes data on genetic counseling patients that payers will want to see. They also provide a solution to the concern payers express about access to genetic counselors in areas where face-to-face counseling may not be available.

We recognize that many members will have concerns that payers will favor telephone counseling over face-to-face counseling. Therefore, one important point to emphasize is that the NSGC and IMD will approach payers to cover genetic counseling provided by Certified Genetic Counselors. IMD policy does not advocate for telephone-only access to genetic counseling and does provide referral to local genetic counselors when positive results or family situations indicate that an in-person visit is optimal. There will be no favoring of telephone over phone counseling and we will provide guidance to payers regarding counseling scenarios where telephone counseling is inappropriate. In fact, for many payers, phone services are more expensive and easier to game than face-to-face services, so they do not have an inherent incentive to favor telephone services. In addition, once genetic counseling is a covered service, it opens the door for coverage in a variety of service delivery models, so we expect the demand for genetic counseling services overall to grow.

The collaboration with IMD is non-exclusive, so others parties could join us if we deem it beneficial to the NSGC, and we will perform regular evaluations of the NSGC/IMD effort to assess whether the NSGC is achieving tangible, beneficial outcomes for its members. No money is changing hands as part of this collaboration, and the NSGC is under no obligation to continue the effort if the objectives established at the beginning are corrupted in any way.

The NSGC leadership recognizes that this is a big change for the NSGC. While we regularly accept sponsorship dollars for companies’ advertising and exhibits, this is the first time we will work with a for-profit company with the goal of achieving a specific strategic objective. We know that there is risk in lending our credibility to another organization and have put the appropriate controls and people in place to monitor progress and ensure our goals are being achieved. We believe fundamentally that we need to band together as genetic counselors to demonstrate that we bring critical value to patients and providers. NSGC’s collaboration with an organization that is, after all, a provider organization of genetic counselors with no financial ties to other genetic services such as testing, will help us achieve our goal of promoting the role of genetic counselors as quickly and effectively as possible.

Wednesday, July 7, 2010

If we build it, they will come

We’ve all heard it. The media, policy-makers, industry and even other medical professionals have all said that there aren’t enough genetic counselors. Is it true? Are the approximately 3,000 certified genetic counselors in the US insufficient for the current demand? Is the growth rate of the profession sufficient to support future demands?

My first response to this statement is to recognize that there’s good news hidden in this frustrating sound bite. The underlying assumption by all who perpetuate it is that genetic counselors are the right professional to help patients and providers decipher the complex world of genetic disease, predisposition, and testing. As genetic counselors, we should recognize this as a victory, as I’m quite sure some of the veterans of our field would remind us that was not always the case.

But let’s not rest there. Looking into the data, the NSGC membership has grown by over 30% over the last six years. We project that the number of genetic counselors will increase by at least 33% over the next five years. Is that enough to meet the demand for our services?

My own career is rooted in prenatal genetic counseling, so I turn to the relationship between OB/GYNs and genetic counselors for inspiration. The frequent phone calls with my referring physician base about which patients were appropriate for referral and which could be handled well within their own practice (or at least until further risk assessment was performed) gives me hope for a collaborative relationship with physicians across all specialties. A January 2006 paper published in Obstetrics & Gynecology on Down syndrome screening reported that only 2% of the 532 OB/GYNs surveyed did not have access to formal genetic counseling services. Given that genetic risk assessment is well integrated into obstetric care and the majority of the over 2,000 genetic tests currently available have applications to the prenatal setting, I would hardly call this a crisis.

So perhaps most people speaking about the “shortage” of genetic counselors are speaking about the future. GeneTests reports that the number of genetic tests listed on its site (which I recognize is not exhaustive) has grown by over 60% in the last 5 years compared with our 30%. Acknowledging that not all genetic tests available have proven value and that the number of genetic tests is only one metric to consider in estimating the demand for genetic counseling services, it is still reasonable to conclude that the profession needs to grow to meet the demand.
The NSGC has plans to address the core issues that have the potential to limit our growth. Obviously, patients and providers need to be confident that if they want to utilize a genetic counselor’s services, the service will be accessible and affordable. The NSGC has multiple initiatives underway to address these potential barriers.

The NSGC has a three-pronged strategy for addressing access issues including federal, state, and third-party payer efforts. The NSGC hopes to introduce a bill this year to Congress to update Medicare regulations to recognize genetic counselors as providers; the language is already written and our Executive Office team is seeking a sponsor. Since many third-party payers follow the Center for Medicare and Medicaid Services’ (CMS) policies, passing a federal bill would not only improve access by Medicare beneficiaries to genetic counselors but other patients will likely have improved access as well. State licensure efforts are in full swing. Delaware’s governor signed genetic counselor licensure into law on July 30, making it the thirteenth state to pass a licensure bill. Six additional states have introduced bills, California has moved forward with a technical amendment to its legislation to address the hold-up in writing regulations, and many more are organizing to introduce bills soon.

The remaining “prong” of the strategy has been constrained by resources and the diversity of the payers themselves. However, success with third-party payers has very tangible benefits for genetic counselors, so the NSGC is putting the tools in place this year to launch a payer initiative next year.

The call to action is coming soon! We will need grass roots efforts for both the federal and third-party payer efforts. Success will require more than the efforts of the NSGC leadership and staff alone. The NSGC’s Pubic Policy Committee and Access and Service Delivery Committee are leading the charge, and there will be further discussion at the AEC in Dallas this fall.

Thinking about all the efforts under way to increase access, I am reminded of one of my favorite movies Field of Dreams and the mysterious voice that inspired Kevin Costner to plow his corn field to build a baseball diamond without knowing the outcome. In that spirit and with steadfast belief that these efforts will bring genetic counseling services to more patients than ever, I say to you: “If we build it, they will come.”

Wednesday, June 16, 2010

Reflections on Graduation

The curtain is closing on another year’s graduation season. I’m sure many of you have attended some parties or commencement ceremonies for nieces, nephews, children, or children of family friends. I was privileged to be invited to both of the graduation celebrations for the two inaugural genetic counseling classes from the training programs at Stanford University and California State University-Stanislaus. These were momentous occasions for them and for genetic counseling; the leadership of both programs worked persistently to achieve a vision, and the presence of training programs in the San Francisco Bay Area, a center of biotechnology, is strategic and influential.

In looking at the graduates’ faces, I couldn’t help but reflect on my own graduation day. The most vivid recollection I had is of the emotions: anxiety over whether I was really ready to see patients on my own, sadness over parting paths with my classmates, pride as I introduced my family to my student life, and excitement as I daydreamed of accomplishing great things.

What’s remarkable is that today, as the President of the NSGC, I feel that same mix of emotions. When I stop to think about the many activities the NSGC is pursuing it is not only exciting but dizzying:

• The NSGC is now a thought leader on public policy around genetics issues as exemplified by the US House of Representatives’ Energy and Commerce Committee reaching out to us as it began its investigation of genetic testing companies.

• As a result of our prompt press release after Walgreens’ announcement of offering DTC genetic testing at local pharmacies, NSGC was mentioned by at least 47 media outlets nationwide; many of you enhanced the power of the message by working with your local media to include the genetic counseling voice.

• The Public Policy Committee is proactively writing a position statement on regulation of genetic testing, and we are providing feedback to the NIH on its plans to create a Genetic Testing Registry. (See the March 19 entry of the Public Policy Blog at http://nsgcpublicpolicy.blogspot.com/ for more details.)

•The NSGC website re-design headed by the Communications Committee is moving along beautifully and according to plan.

• The Service Delivery Model Task Force will shortly be launching a critical survey to the membership to address the concerns around a shortage of genetic counselors.

• The Practice Guidelines Subcommittee is churning out proposals on a regular basis.

• Efforts to expand state licensure and introduce federal legislation to amend Medicare regulations to recognize genetic counselors as providers continue to chip away at barriers to access.

• The 2010 Professional Status Survey analysis is nearing completion and targeted for release in the coming weeks.

• An Environmental Scanning Task Force is proactively assessing trends in genetics and healthcare to help guide next year’s long-term strategic planning.

• The Education Committee launched a pilot of an innovative webinar program to expand members choices of educational programs.

There are so many more, I can’t possibly list them all. It is thrilling to see them take shape and succeed.

I experience other emotions too, as I watch colleagues drift in and out of involvement with the NSGC and worry whether we are adequately addressing the future risks to our patients. However, when I stop long enough to think about how much we have accomplished, my pride in the NSGC and in our profession is almost overwhelming. We don’t just aspire to be thought leaders; we ARE leaders in the genomic era.

Friday, May 21, 2010

Finding Our Unique Perspective

On May 20, 2010, the NSGC Board voted to approve a revised version of the NSGC’s Reproductive Freedom Position Statement. The decision marks the end of many months of discussion by a group of volunteers that formed the Reproductive Freedom Task Force, which was created by the Public Policy Committee to address questions from the membership about the appropriateness of the previous statement.

I want to personally thank the members of the Task Force for their service. They tackled a difficult subject that is central to many genetic counselors’ daily responsibilities. The Task Force consisted of five members selected for diversity of practice setting and variety of personal beliefs on the subject of abortion. They began by developing key questions that the NSGC should answer regarding whether the original statement should be retired, affirmed, or revised and openly and respectfully shared not only their personal views but their views of how reproductive options fit into the responsibilities of clinical genetic counselors. They consistently returned to the central questions about the unique perspective of genetic counselors and the common ground that all genetic counselors have in relation to reproductive options.

I was fortunate to accompany the Task Force along portions of their journey, as I observed several of their discussions. I was incredibly impressed by their professionalism, respect for each other’s diverse points of view, and commitment to representing the needs of all patients who seek or might seek genetic counseling. Several participants commented that their own thinking had evolved on the subject as a result of the in-depth, open discussion.

The Task Force concluded that the NSGC should have a statement on reproductive freedom because genetic counselors play a significant role in the reproductive choices that patients make, but the previous statement did not reflect the full spectrum of reproductive options that patients consider in the context of genetic counseling. We received many comments back from the membership during the comment period, and the responses were mostly positive. Some edits were made to the proposed statement based on comments from members.

Thank you again to the Task Force and to the many members who took the time to provide feedback to them. I’m very proud to represent a profession that can tackle a difficult issue with professionalism, respect, and above all, a commitment to the patients we serve.

Friday, May 7, 2010

Show me the Money: Expanding the NSGC’s Resources

Like many other members of the NSGC, I decided to become a genetic counselor because I was fascinated by how genetics impacted families and wanted to help people understand and integrate genetic information into their lives. In school and in my work, I focused on how to best educate and support my patients rather than on how to justify my position to my institution or how genetic services fit into the economics of healthcare.

After attending business school, that’s all changed. I pursued an MBA because I believed pragmatic business skills would be needed to integrate genetics into mainstream medicine. This pragmatism includes evaluating revenue and expenses whenever I face a decision – even when that decision includes significant emotional factors. For example, I didn’t buy a hybrid car until after I had built a spreadsheet to evaluate the long-term savings on gas in light of the higher price of the car. (For those of you who are wondering, you have to place at least some value on just being “green” because you won’t get your money back from gas savings alone.)

The NSGC Board recently voted to modify our strategic plan to incorporate a focus on revenue generation. We have always been very conscious of expenses and conservative in financial commitments and savings, but as an organization, we have not evaluated all opportunities to bring in dollars. Expanding our resources will be critical to growing the profession. We need to invest in promotion of the profession, activities to support and influence public policy that protects our patients, and evaluation of new roles for genetic counselors. We will continue to consider all sides of a proposal for benefits and risks as we always have; we are simply adding revenue as a benefit.

Still, at times, we will naturally question why it isn’t simply better to move forward with a program for the enrichment of the public or betterment of society. And, at times, we will be right. At other times, we need to think about the many patients and doctors we CAN’T reach with our current programs – what about them? What could this free program look like if we had better resources? Think of a world where we are not so dependent upon membership dues and AEC registration fees and then ask whether revenue is an appropriate goal. Ultimately, the NSGC wants more patients to have access to the valuable services genetic counselors provide.

Friday, April 23, 2010

A Vision for the Future

April 23 2010 - On this National DNA Day, the National Society of Genetic Counselors (NSGC) announces its new vision statement: “Integrating genetics and genomics to improve health for all”.

The NSGC’s former vision statement was “to be the leading voice, authority, and advocate for the genetic counseling profession.” As we reflect on this vision, it is clear that we have met these goals; no one would question that the NSGC is the voice of the genetic counseling profession. Vision statements should be enduring and aspirational to encourage an organization to achieve loftier and loftier goals. It is time for us to push ourselves once again; it is time for change.

In crafting a new vision statement, the Board wanted to reflect the expanding roles and future prominence of genetic counselors across healthcare, public policy, education, industry, and public health. The common role of the genetic counselor across all of these environments is that we integrate genetics and genomics in a practical, personalized, and cost-effective way. Our goal is simple: ultimately, we want to improve health – for patients, for doctors, for society.

National DNA Day commemorates the successful completion of the Human Genome Project , which promised to unlock the secrets of the genome. The world needs genetic counselors to fulfill this promise – to bridge the gap from the science to the day-to-day lives of the people intended to benefit. As reflected by our new vision statement, the NSGC will lead the way.

Thursday, April 1, 2010

Nominations, nominations, nominations

Any good realtor knows that the most important quality for a piece of real estate is location, location, location. Similarly, the most important contributor to the success of the NSGC’s governance is nominations, nominations, nominations!

I am the first NSGC President to be elected under the NSGC’s new governance model, wherein a slate of individuals is presented to the membership for ratification by a Nominating Committee. The Nominating Committee is a group composed of both Board members and members-at-large. Anyone who is nominated (or self-nominated) will be considered by the committee through a rigorous evaluation process that includes a written application (remember those graduate school essays?) and a phone interview. The Committee proposes a slate of individuals selected for leadership skills and a balance of different points of view based on practice setting, specialty, and geographic region. The purpose, just like a job application, is to select individuals who have the qualities necessary to serve on an association Board; these qualities are difficult to assess through an election process that requires skimming a short bio about each candidate.

However, this process only works if members participate in the nominations process! If only the current NSGC leaders nominate people, the membership loses a critical opportunity to participate in the governance process. Again, all nominees will be evaluated using the same rigorous standards, and the Committee seriously considers the comments the nominator writes about the nominee.

Of course, the Membership Committee continues to evaluate the new governance model. I welcome your feedback about the governance model, and in the mean time, I strongly encourage you to nominate people with proven leadership skills. We can’t select the people you want to lead if you don’t nominate them. Visit this survey to submit your nomination:

http://www.zoomerang.com/Survey/?p=WEB22AA6SGZTJX

Friday, March 5, 2010

The Value of Branding: Right on Target

Below is a blog entry from guest blogger, Sandra Blum. Sandra is a genetic counselor who has worked for many years marketing genetic services. Sandra currently works for Genentech on the patient marketing team, but she writes below about her experience at her last job at Genomic Health, which offers Oncotype DX, a pharmacogenetic test for breast cancer. Sandra describes how creating a brand translates to benefits for the NSGC.

Liz Kearney, MS, CGC, MBA
NSGC President



One of my favorite projects in the last year was identifying the brand identity of the product that I worked on. This was an exercise in characterizing the brand's personality within the company in order to establish external branding that would be unique, recognizable, and long-lived. In the process, we talked about a variety of products and companies that have very successfully honed in on their brand identity and leveraged that to establish themselves in their respective markets.

As a fan of Target, I love that their internalized brand identity is apparently "cheap chic". I think this is so spot on - the store has great prices on great looking stuff. Might not be the highest quality, but that's not what they are about. This brand identity has helped the Target chain stay focused on what they do best and what is unique about them, and the brand is carried throughout their advertising and the products you'll find in their store. There is a difference between Target and Walmart - and that stems from their brand identity translated into their branding and decision-making.

The same can be said of NSGC. Genetic counselors are a unique group of providers and our professional organization has something unique to say to us as members as well as to external stakeholders. Our "brand identity" is a way to crystallize our goals and inform the choices we make as a professional organization, and our logo and branding is a way to express that visually and succinctly.

Tuesday, February 16, 2010

The Many Faces of Diversity

A common criticism of the genetic counseling profession is lack of diversity. In fact, I would guess that many NSGC members have looked around at an AEC plenary session and noticed that most of us look the same. I myself many years ago told another genetic counselor, when making plans to meet her for the first time, “You shouldn’t have any problem finding me. I look like every other genetic counselor.” How do we as an organization increase our diversity? Like any change, the first step is identifying the fundamental issue. Most people think about ethnic differences when they hear the word “diversity”, but true diversity in an organization goes well beyond the inclusion of people with different skin color. Creating a culturally competent organization doesn’t begin with recruiting more people of different ethnicities into the field; chances are, if we did interest them, many might ultimately reject the profession for fear of isolation or a lack of understanding from their potential peers.

True diversity begins by changing how we approach differences of all kinds – diversity of thought, religious background, work environment, and yes, even political affiliations. Pursuing and accepting diversity includes seeking the opinions of those whose backgrounds and beliefs may differ from the majority and actually encouraging their contributions to discussions and explorations of major issues facing the genetic counseling profession. It doesn’t mean that minority opinions have to prevail -- but rejecting them without serious consideration sends a clear message that differences are not welcome here.

In recent years, our profession has begun to expand and branch into new areas of health care. With that expansion comes a “shock” to a culture rooted in a strong, shared history. My conjecture is that extending the open-minded, nonjudgmental approach we use with our patients to discussions with our own colleagues is not only required to increase diversity overall but is actually much more difficult than it sounds. However, the patients we want to serve vary in their own beliefs, political affiliations, and ethnic backgrounds. If we want patients to feel comfortable seeking genetic counseling, they need us to publicly reflect the openness we demonstrate in the patient consultation room in all of our external communications, too.

I look to the past for confidence that we can succeed. I remember the controversy years ago about offering cystic fibrosis carrier screening despite the less than 100% detection rates. There were many who argued it should not be offered while others pushed to accept the less than perfect screening and recognize the important role the genetic counselor could play in educating patients and doctors about the testing limitations. We adapted our practice to accommodate those changes and generally accept that screening is available today. I see no reason why we can’t resolve or accept other differences as well.

The NSGC Board Culture Statement, developed several years ago as part of our organization’s governance changes, reads: “the Board recognizes that diversity exists in many forms, and seeks to maintain a Board that encourages respect for and inclusion of diversity at all levels of the Society.” A 2009 NSGC Task Force on Organizational Cultural Competency developed a plan to create a more welcoming environment, and the Membership Committee will begin implementing this year. Creating cultural competency requires extending the Board’s commitment to diversity to a partnership between the leadership and the membership. We’re ready. Are you?

Thursday, February 4, 2010

Position Statements: the NSGC’s Leadership GPS

What do position statements and global positioning systems (GPS) have in common? It occurs to me that just as an association’s mission, vision, brand, and strategic plan guide the leadership in its path to its objectives, the NSGC’s position statements are a metaphorical GPS for a particular issue.

For example, the NSGC Board recently approved a position statement on gene patenting. The basic process to develop the statement was the same as has been used for NSGC’s other position statements. An event in the news triggered the Public Policy Committee to undergo an examination of gene patenting from the perspective of the NSGC. The discussion included, as it always should, consideration of whether the genetic counseling profession has relevant expertise and a unique point of view to bring to a broader debate about an issue. In the end, the Committee concluded that indeed, genetic counselors, in their role in assessing patients’ genetic risks, should share a perspective about the ability of holders of gene patents to issue exclusive licenses. As experts in genetic counseling, we know that genetic testing is changing and moving toward whole-genome and multi-gene analysis. Exclusive licenses on gene patents will impede access and development of genetic testing just as we seek to gain from a growing understanding of how genes interact to cause disease. A draft statement was released to the membership for comment, changes were incorporated, and the Board approved the revised statement.

Now, organizations or people outside NSGC can easily assess where NSGC stands on the issue of gene patenting. It’s the equivalent to mapping “current location” on a GPS! As an added benefit, the NSGC leadership can use the statement to guide policy decisions or requests for comments about the issue of gene patenting. It does not, however, imply that all NSGC members agree with the statement; each member is entitled to his or her own viewpoint, which may differ as a reflection of the growing diversity in our field.

So, if I receive any calls from the media or questions from other organizations about NSGC’s opinion on gene patenting, I’ll enter the coordinates of the particular inquiry into our position statement and evaluate our response.

Wednesday, January 20, 2010

What can NSGC learn from TV?

Last fall as a guest blogger on this blog (see entry September 21, 2009 below) and recently as a contributor to Perspectives in Genetic Counseling (http://www.nsgc.org/members_only/perspectives/winter09/Perspectives_Winter_2009.pdf). I wrote about the importance of branding an association. When the NSGC Board decided several years ago to develop an NSGC “brand”, the first step was to select a specific audience, or “target customer”. To illustrate the selection of a target customer, I look to my favorite cable television station, tbs. A TV station has many similarities to an association, as it is service-based and depends heavily on support from external parties, namely advertisers. Attracting more advertisers means investment in the programming, which attracts more target viewers, which attracts more advertisers – a television version of the circle of life.

Some of you may remember, as I do, the TBS station from many years ago when it was the “TBS Superstation” and ran a hodge-podge of re-runs and movies typical for many cable channels. If you don’t remember, you are reinforcing the reasons why TBS needed to change! At that time, the channel was not clearly differentiated from other stations as the place to go for a specific type of programming. In other words, TBS was not very memorable and potential viewers couldn’t tell whether it was the station for them or not.

TBS underwent a re-branding effort beginning in 2005, and I was fortunate to hear the brand manager speak about the effort later that same year. The first step the management took was to analyze the different possible TV viewers and place them into categories. They considered many types of characteristics such as gender, age, employment status, household constitution (e.g. number and age of adults, children, etc), hobbies, etc. Next, they identified the customer group, or target, that they could serve better than anyone: the busy adult who wants “comfort TV” that is a reliable release from daily demands of work and household responsibilities. The benefit the station thought it could provide was an escape with familiar friends on funny programs. (Think about Friends, Everybody Loves Raymond, etc.)

This process of identifying a target customer and what benefits an organization or product can bring to that customer better than anyone else is the basis for creating a brand. NSGC went through a similar process. Board members determined that the best way for NSGC to serve genetic counselors was to promote the profession itself, an activity that no other organization is likely to undertake. To do so, the NSGC Board chose to target physicians, who are key gatekeepers for patients’ access to genetic counselors and repeated beneficiaries of the value genetic counselors bring to their patients. After all, who will hear about the patient’s satisfaction with having received helpful, easy-to-understand translation of genetic information to facilitate decision-making? The physician who referred! And who could potentially discourage a patient who has heard about genetic counseling and asks whether it is appropriate for her? Again, the physician – at least one who hasn’t heard from NSGC’s brand campaign yet and therefore doesn’t know the value the patient and physician both receive from a genetic counseling consultation.

Once the target customer and key benefits to that customer are determined, the next stage of branding is tactical, meaning that all the creative development occurs, such as designing a new logo and choosing colors, developing key phrases about benefits, etc. If you aren’t among tbs’ viewers, you can see an example of its creative work on its website, www.tbs.com. The tbs logo, with its casual, lower-case letters, half-circle “smile”, and the phrase “very funny”, says it all! The result is that the target customer can consistently count on finding that welcome “release” in tuning to tbs.

Did it work? The station’s management faced some initial challenges with changing to advertisers seeking its new target customer. I recall seeing an advertisement in the fall of 2005 for “The Matrix” -- very funny? I don’t think so. However, a recent, quick review of its website demonstrates a line-up of character-filled, funny sitcoms as well as original programming that suggests success and the ability to invest in further development of its “very funny” brand. Also, its advertising likely appeals to the target viewer: Progressive.com’s humorous online “store”, a Pinesol queen with a handsome servant, and numerous time-saving products to manage the home like Turbotax, Select Harvest Light soup, and Bounty paper towels.
What does tbs’ branding success have to do with NSGC’s recently begun branding efforts?
Branding NSGC will increase visibility and credibility for genetic counselors. This means NSGC will attract more dollars through advertisers, collaborators, membership, etc. allowing NSGC to expand and enhance member services and increase investment in critical strategic initiatives like improving access to genetic counseling services. Physicians will recognize which patients will benefit the most and refer a larger number and/or more appropriate patients. Prospective students are more likely to learn about the genetic counseling profession to potentially increase the diversity of our field.

I hope this example has helped demonstrate why NSGC is investing in creating a brand and how we will do so. I’m exhausted from writing this blog and just want to relax in front of television…I wonder what’s on tbs?

Wednesday, January 6, 2010

As many of you have heard, the NSGC is undergoing a transformation around our branding and marketing efforts. This includes a new logo, color palette, website and marketing target for our profession. In recent years, the American Board of Genetic Counseling went through the same process. We thought it would be helpful to hear more about the process. Anne Greb who was a member of the ABGC board of directors during this time was gracious enough to be a guest blogger to provide some perspective to our membership. What follows is Anne’s account of the process. Thanks Anne,

Liz Kearney
NSGC President

I recently had the opportunity to serve on ABGC’s Board of Directors. At my very first board meeting, I remember much discussion among the board members about how as a group, genetic counselors just didn’t understand ABGC’s mission, much less how important it is. Besides confusion about ABGC’s role, the Board realized that the organization had an image problem. Some on the Board argued that ABGC’s role is to protect the public by recognizing genetic counselors who are competent to provide genetic counseling services. Others felt that ABGC needed to do a better job helping counselors promote their credential. After many discussions and much debate, the Board decided that ABGC needed a make-over.

Like many multi-talented and hardworking genetic counselors, we as board members thought we could figure out what to do about ABGC’s image problem and then do it. I had recently been involved in a marketing initiative at my own institution and knew that we were out of our league. If we were serious about changing ABGC’s image, we would need professional help. To this day, I’m still not sure how I was able to convince the Board to enlist the help of a marketing firm, but I did. Even though this involved a significant investment, in the end the Board understood how important promoting the value of the ABGC credential was in the continued evolution of the genetic counseling profession.

At this point the hard part was done (for the most part!). Working with our marketing firm to develop a plan was enlightening and a lot of fun. Nothing replaces the value of an outsider’s perception and insight. The firm identified the factors they felt contributed to the misperceptions about ABGC and a realistic strategy was outlined to address them. The really fun part for me (a wanna be graphic designer) was to work with them to develop what in the business is called the “trade dress,” or the look of an organization. The process was actually pretty interesting. Ground rules needed to be established since there would never be 100% agreement on the final look. Our marketing firm told us that no matter what we came up with, half of our group will like it and the other half won’t. So up front we decided who would be involved in making the decision about the new look and the others would just have to stay quiet – not easy for genetic counselors!

In the end, these marketing efforts helped ABGC move forward. The organization’s new look is more professional and sophisticated. ABGC has a different attitude about its relationships with its constituents and can more effectively meet their needs. The bottom line – marketing is necessary for the success and growth of any organization. It wasn’t enough for just the members of ABGC’s board of directors to believe in the organization and its mission, others needed to also.

Anne E. Greb, M.S., C.G.C.
Genetic Counseling Graduate Program DirectorWayne State University School of Medicine

Monday, January 4, 2010

New Year, New President…New NSGC?

New Year’s is a time for both reflection and resolutions. For me, as I begin 2010 as NSGC’s new President, I can’t help but think back to the first time I served on the NSGC Board as the Region VI Representative from 2002-2004. NSGC was different then. We had 21 Board members and met as a full Board only twice per year apart from some intermittent email. The Committee Chairs, who were appointed by the President, served on the Board along with the Regional Representatives and Officers who were elected through the majority votes for one of two candidates.

Today, we have twelve Board Members selected by a Nominating Committee that reviews each applicant’s written application and interview, and the selected candidates are ratified by the membership. The Board meets monthly by conference call in addition to the twice per year in-person meetings and frequent, in-depth email discussions. Committee Chairs are selected by the President and create strategies to accomplish the overall organizational goals outlined in NSGC’s strategic plan. The intention of these changes is to create a more nimble, strategic organization; more work will be done going forward to be proactive and predict changes that affect the practice of genetic counseling in the era of genomic medicine.

Just as NSGC was different during my first term on the Board, I was different then, too. Looking back at that na├»ve region rep, I almost feel as if I’m reviewing someone else’s performance rather than my own. What did she know about running an association? She actually had to ask for help in manipulating the Excel file NSGC used for the annual budget. And the unfamiliarity of terms like “environmental scanning” and “strategic planning” made her sweat.
Since then, I’ve been to business school, worked in a corporate environment, and lost a parent. It’s hard to say which of these experiences has been more profound, but I know with certainty they have changed me permanently and shaped my vision for NSGC and for myself as one of its leaders.

As for transition from 2009 to 2010, there was of course no NSGC celebration at Times Square or even a virtual Times Square. And it would be a stretch to say we have a “new NSGC”. There are changes though. We have new Board and Committee Members and a new strategic plan (http://www.nsgc.org/about/strategicPlan.cfm). Each of NSGC’s leaders has made a resolution to complete this plan. As a result, there will be more changes in 2010 including a new website, new legislation we hope to introduce to Congress, a new marketing plan, and a new focus on leadership.

So, what is my New Year’s Resolution as NSGC’s new President? It’s simple. To serve NSGC to the best of my ability with the hope that when I raise my glass at midnight on December 31, 2010, NSGC and its members will be just a little better off than they were the year before.

Happy New Year, NSGC.