Wednesday, December 30, 2009

My Final Presidential Blog for 2009

I wanted to take this opportunity to wish everyone a happy, healthy and prosperous new year. It has been an honor to serve as the president for the last year. It has been a very challenging and rewarding year for our profession. We have built on our past successes and will continue to do so into 2010. I am very excited at the direction the NSGC is taking. Many of the projects that we started in 2009 or before will come to fruition in 2010 including our new logo, website, and new branding and marketing strategies. In addition, we continue to make strides with state licensure and should have our federal legislation, which will recognize genetic counselors as providers under Medicare, introduced in the coming year as well.

Remember each of us take some responsibility for the future of our profession and it only moves forward with the collective efforts of our entire membership. You should all take great pride in past accomplishments and help insure future success by continuing to provide your feedback and support to the NSGC.

Thank you again for the opportunity to serve as the president and I look forward to helping our current and future leaders integrate the genetic counseling profession across the healthcare spectrum.

Steven Keiles, MS, CGC
President, NSGC

Wednesday, October 28, 2009

The Voice of NSGC Spanning the Globe

Sorry it has been awhile since my last update but I have been traveling a bit on behalf of NSGC in addition to my day job at Ambry Genetics. I promise to provide more frequent communications throughout the rest of the year. As many of you know, the National Society of Genetic Counselors is one of the thought leaders in genetic counseling and the emerging field of genetic medicine. It is in this vane that we are constantly being asked to provide our input at the table when these important discussions take place.

In late August, I attended a meeting in Atlanta where I served as a member of the National Task Force for the Early Identification of Childhood Neuromuscular Disorders. This task force was cosponsored by Parent Project MD and the CDC and the major goal of the group is to decrease the time to appropriate referral and diagnosis for children with neuromuscular disorders. This is an ongoing project with 2 more years of funding. A website and further plans are currently in development. NSGC was the only genetics provider organization that served on this task force.

In September, I attended a National Institutes of Health (NIH) meeting, “Examining the Scientific Basis for Spinal Muscular Atrophy Carrier Screening”. The meeting which is cosponsored by The National Human Genome Research Institute, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the National Institute of Neurological Disorders and Stroke will inform the research agenda for the field, and provide a venue for discussion among researchers, voluntary organizations, professional societies, and NIH staff. The meeting agenda included presentations on the state of the science and on policy issues, along with discussion opportunities. Attendees included representatives of genetics societies, ACOG, and many advocacy groups related to neuromuscular disorders that include SMA. Follow up conversations and next steps are in progress.

This month I had the opportunity to speak at the International Society of Nurses in Genetics (ISONG) annual meeting in San Diego. The topic covered the latest developments of the NSGC and focused on collaborations. In addition, we have been working more with ISONG and our 2010 annual meetings will be back to back in Dallas. We are looking forward to having some great learning opportunities for both our organizations members. In addition, the talk I had an opportunity to moderate a panel of patients with genetic conditions and how they deal with the challenges these conditions present. Following the ISONG meeting I had one whole day at home before heading off the American Society of Human Genetics (ASHG) meeting in Honolulu (not as glamorous as it sounds). I was invited by Bruce Korf, MD the current president of the American College of Medical Genetics (ACMG) to present an update from NSGC to their board of directors. I also had the opportunity to meet several staff members of the ACMG. We are hopeful the continued increase in communication between our two organizations will be mutually beneficial.

The presence of NSGC at meetings like those described above will continue to reinforce our vision and our mission.

Steven Keiles, MS, CGC
NSGC President

Monday, September 21, 2009

Branding the NSGC

This is a perfect opportunity to introduce many of you to our president elect Liz Kearney. Liz, who also has an MBA in marketing, has been leading our branding efforts this past year. The following is from Liz to get everyone up to speed on the in and outs of branding the NSGC.

Steven Keiles, MS
NSGC President

When you hear the term “brand” or “branding”, what comes to your mind? You might think of consumer products (like Nike or Apple) or if you grew up in the heart of the Midwest like me, you might think of cattle! Being both a genetic counselor and a marketer, I’d like to share some thoughts on what branding is and why NSGC should embark on developing a brand.

Take a minute to think about your favorite consumer brand. What images do you picture? Does that brand have a spokesperson, and if so, what does he or she represent to you? What emotions does the brand evoke in you?

Being somewhat of a shopaholic, one of my favorite brands is Coach. (Those of you who are more thrifty, feel free to judge!) To me, Coach represents style, quality, and luxury, and I envision well-dressed, professional women who exhibit confidence. This past holiday season, my husband demonstrated another benefit of branding when he purchased all of my gifts at Coach! Shopping at Coach assured him he was buying consistent quality that he knew I would appreciate. In other words, shopping by brand made his task easier. Of course, the efficiency of one-stop shopping and a 25% off coupon also probably had something to do with it.

However, this example demonstrates the power of a brand. A “brand” consists of all the images, emotions, and experiences that a brand evokes or associates in the customer’s mind to demonstrate the difference from other competing products or services. In other words, branding is not just a logo. It permeates all aspects of a customer’s entire experience with the product or service.

NSGC is embarking on a branding effort that began a few years ago when the NSGC Board created a brand platform that defines the benefits genetic counselors bring to healthcare; by doing so, the NSGC brings value to its members as it advocates for the genetic counseling profession. The next step in branding has recently begun, as the current Board approved moving forward with creation of basic brand elements, such as a new logo and brand color palette.

Why brand an association? There are many reasons! Branding builds external credibility and attracts attention and dollars; with a strong brand, the NSGC can increase the power of its voice to the external world to advocate for the profession. And more pragmatically, a well-developed brand platform provides guidance on how to spend limited resources. To build a powerful brand, we will have to make strategic choices and consistently represent the core elements of our brand in all aspects of what we do, including our programs, website, brochures, communications, and PR messaging.

I hope you are as excited as I am about this opportunity to increase NSGC’s visibility! I thank the NSGC Board and past leadership for its vision in initiating and supporting this effort.

Liz Kearney, MS
NSGC President-Elect

Thursday, August 27, 2009

Journal of Genetic Counseling to get an Impact Factor

I have just returned from representing NSGC at the NIH State of the Science meeting regarding using Family history to improve health outcomes. Check out the consensus statement released by the panel. In addition, you can check out updates released throughout the meeting on twitter at You can sign up now to follow all future NSGC updates on twitter. I am heading to Atlanta this weekend to serve as the NSGC task force member for a Parent Project Muscular Dystrophy/CDC funded initiative to improve early diagnosis, care, and management for Duchenne and Becker muscular dystrophy (DBMD) and other childhood onset muscle disorders.

There is also some exciting new to share from Bonnie S. LeRoy, Editor-in-Chief and Pat McCarthy Veach, Assistant Editor of the Journal of Genetic Counseling which has recently been accepted for coverage by Thomson Reuters, effective 18:1 (Feb 09). The Journal will get an Impact Factor in 2011, but in the meantime it will be indexed and abstracted in Science Citation Index Expanded (SciSearch), Journal Citation Reports/Science Edition (this is the Impact Factor section), and Current Contents/Clinical Medicine. This is a tremendous accomplishment for our Journal and our profession.

So what does it really mean? An impact factor provides one indication of the extent to which the Journal of Genetic Counseling is being read and cited in current research. It is a gauge of sorts, indicative of the possible impact the journal has on current research in our area of expertise. It is important because some funding agencies and academic institutions require authors to publish in journals that have achieved an impact factor. From a practical standpoint, this means that the Journal of Genetic Counseling is now a publication option for many more authors. The number of manuscripts submitted should increase, and the Journal might be a publishing opportunity for authors conducting research in a wider variety of areas.

So how can you help the Journal of Genetic Counseling? You can tell researchers in your institution about this achievement. If you are a researcher, you can send your manuscripts to the Journal of Genetic Counseling knowing that you are a major factor contributing to the high quality of research in our profession.

This is an achievement for all of us because the Journal of Genetic Counseling is our professional window to the scientific community. Genetic counseling has indeed earned a place at the table with other sciences.

I would like to offer a well deserved thank you to both Bonnie and Pat and everyone involved with the Journal of Genetic Counseling now and in the past for their efforts in helping to increase the significance of our journal and further elevate genetic counselors as recognized thought leaders of genetic medicine.

Steven Keiles
President, NSGC

Monday, August 10, 2009

NIH Consensus Development Program & Twitter

The NIH Consensus Development Program is convening a state-of-the-science conference to assess the available evidence on family history and improving health. This conference is scheduled to take place on August 24th-26th at the NIH in Bethesda, Maryland. The conference statement will be prepared by an independent panel on the basis of a systematic literature review, expert presentations, and audience commentary. This conference is open to the public and there is no charge to register. I will be there representing the NSGC and I encourage everyone who able to attend to participate in the process that will undoubtedly have an impact on the genetic counseling profession. I look forward to seeing those of you who can attend at the meetings.

For those of you who cannot attend I have another addition to the NSGC’s menu of communication and this one is free. We have started a twitter account in the hopes of providing brief updates from your president, the executive office and the board of directors. This is also an opportunity to reach outside of our profession to communicate to colleagues, other health care providers, and the public at large about genetic counselors and what we are all about. Spread the word that anyone can now follow the NSGC at I am planning on providing real time updates from the NIH conference, so now is the time to set up your twitter account and follow along.Steven Keiles, NSGC President

Monday, July 27, 2009

No Summer Lull for NSGC

I hope the summer has been a relaxing one for all of you. It has been a busy one for NSGC. Here is a recap of the recent happenings. In July, both myself and our president elect Liz Kearney attended the Genetic Alliance Day on the Hill. We had an opportunity to lobby Senators Boxer and Feinstein from California as well as Nancy Pelosi, the speaker of the House. Our agenda included increased access to genetic counseling services which is one of the key issues of our organization as well. As many of you know we will be introducing a bill in to Congress that helps address this issue. Once our sponsor has been identified, we will be looking to our membership to come together on a grassroots level and help our Public Policy Committee see this bill through into law.

The NSGC Public Policy Committee works to monitor and respond to policy issues related to genetic counseling and healthcare and to ensure the genetic counseling profession is a recognized and integral part of the healthcare system. To keep you updated on recent issues, the Public Policy Committee has started a blog. The link is Check the blog frequently for news and analysis of issues important to genetic counselors.

Following our day on Capitol Hill, we attended the Genetic Alliance conference with its theme of Discovering Openness in Health Systems. I presented a workshop with Wendy Koziol from our public relations firm, PCI, and Alice Lara, President & CEO at Sudden Arrhythmia Death Syndromes (SADS) Foundation. The session focused on dealing with all of the different forms of media as an organization. It was very well received and also provided us with some useful information we can utilize within NSGC. There were many great educational presentations to attend and numerous opportunities to catch up with the many genetic counselor colleagues that were present. If you want more information, check out the program.

Last week both Liz Kearney and I had to the opportunity to attend a leadership forum sponsored and funded by our management company SmithBucklin. The fact that this was sponsored by SmithBucklin speaks volumes as to their commitment to their clients and it was certainly appreciated by both Liz and I. This was an incredible opportunity to network with other association leaders and also to learn the latest trends in associations in our current economy. There was some excellent information about social media and how it is being used and received by associations and its members. Stay tuned for more information about how NSGC will provide additional communication both with its members and to the community as a whole.

Steven Keiles
NSGC President

Thursday, July 2, 2009

Liaison Activity

Following is an update of recent events where I had the opportunity to represent the NSGC. The first meeting occurred on June 8th and 9th at the NIH in Bethesda entitled “Developing a Blueprint for Primary Care Physician Education in Genomic Medicine”. This meeting was spearheaded by Alan Guttmacher,MD, Acting Director of the NHGRI and W. Greg Feero, MD, PhD, the senior advisor to the Director for Genomic Medicine. This meeting had several co-sponsors including; ACHDNC, CDC, HRSA, NCI, NHGRI, NHLBI, ORDR and NNSGRC. This was an invitational meeting which proposed a work product that would be a 5 year blueprint for improving primary care clinician literacy in genetics and genomics.

Those in attendance included representatives from ACMG, AMA, ACP, AOA, ACPM, AAFP, PAEA, STFM, AACOM, SGIM, AAP, ACOG, in addition to several academic institutions as well as representatives from the above mentioned sponsors. It was a great opportunity to be at the table during such a critical juncture of health care decision making. The meeting began by focusing on the current landscape of primary care education in genetics and genomics from the perspectives of genetics, primary care and academic medical communities. We then identified the core education needs in genetics and genomics as defined by the primary care communities. We also indentified the opportunities and barriers that face efforts to enhance primary care provider literacy and proposed some concrete strategies to take advantage of existing opportunities for genetics/genomics education at various stages of primary care physician education. There was a separate focus on undergraduate medical education, resident training and practicing physicians to ensure the best chance for successful implementation. The importance of the role genetic counselors will play was shared by the participants and our opinions were highly valued.

Following the conclusion of this meeting, I flew to Boston (I won’t go into the details of the 3 hour delay at Dulles airport) to speak at the first Consumer Genetics Show. This was a show that focused on direct-to-consumer (DTC) testing and the latest advances in genomic medicine. There were many very high profile speakers and it was an honor to be included to represent the views of our profession. There were 200 plus attendees at this meeting including several genetic counselors. The attendees were a mix of mostly clinicians and industry representatives with some others representing the financial sector and a small number of actual consumers. I spoke about the “View from the Genetic Counselors” regarding our perspectives on DTC testing. I focused on our background and training and highlighted our expertise in dealing with complex genetic issues. One issue of emphasis was the importance of integrating one’s family history into all testing scenarios and stressed how without taking family history into account, patients could undergo undo harm. I also had time to address our new strategic plan and state our goal of preparing our members for the changing landscape of healthcare in addition to educating our members about the latest technologies so we would be in a position to be among the leaders of implementing genomic medicine across the healthcare spectrum.

It was a great opportunity to meet some of the people in industry as well as have a chance to learn about the great things some of members are pursuing. It was a great opportunity to represent our field in such a positive way to some of the people on the cutting edge of technology and medicine.

Friday, June 19, 2009

Core Skills of Genetic Counselors

At the NSGC Strategic Planning meeting held in August of 2006, the Board had a discussion about the importance of identifying the core skills possessed by genetic counselors that translate into a variety of professional roles and settings. The strategic initiative stated: “Position Genetic Counselors as key players in the integration of genetics across the healthcare spectrum”. An item to accomplish this was given as:

“Identify and promote the core skills of Genetic Counselors to support the development of new professional roles.

The intention for developing this initiative was that core skills, once identified, could then be used to help promote genetic counselors, and to support the efforts of NSGC members to pursue varied and diverse roles within healthcare, industry, and the many other settings in which NSGC members work now, and may work in the future as genetics and genomics continues to evolve.
A Core Skills Task Force was established. This Task Force reviewed reference materials and conducted telephone interviews with genetic counselors practicing in various roles in both clinical and non-clinical settings. This research produced a listing of core and additional genetic counseling skills (a comprehensive skill chart is attached). In summary, the Task Force identified six key areas of skills that are translatable to a variety of work settings and, taken together, differentiate genetic counselors from other health professionals. Detail on these skills and how genetic counselors use these skills to benefit potential employers and audiences is available in the summary of the Task Force report that is posted on the NSGC website at

I encourage all NSGC members to utilize this information as you talk with your current and potential employers about the diverse skills you possess as a genetic counselor. It is our hope that this report and the recommendations for continuing education will allow NSGC to support our membership in expanding into new and exciting areas of employment. We can provide some of the tools but it is still up to each individual to market themselves as best they can.

On behalf of the Board and the membership of NSGC, I would like to thank the members of the Core Skill Task Force:

Kristin Baker Niendorf, MS, CGC, Chair
Amelia Chappelle, MS
Michelle Fox, MS, CGC
Elizabeth Kearney, MS, MBA, CGC
Caroline Lieber, MS, CGC
Bronson Riley, MS, CGC

-Steven Keiles, MS

Thursday, May 14, 2009

NSGC 2010 - 2012 Strategic Plan

Welcome to the future of NSGC communication. Our intention is to utilize the NSGC blog as a way to get information to our membership in a timely fashion while allowing us to quickly respond to other relevant issues that affect the genetic counseling profession. Another advantage is this blog becomes searchable by outside organizations giving us additional opportunities for proactive messaging to both the mainstream media and the general public.

This will not be a traditional blog in that comments will not be directly posted to this site. However, I do encourage comments and appropriate comments may be summarized and posted as a representation of the responses. The main intention for this blog is to serve as an additional communication tool for the NSGC leadership. So in that light, on behalf of the NSGC board of directors, I would like to take this opportunity to introduce NSGC’s 2010-2012 Strategic Plan. This plan is a result of significant input from NSGC’s membership, external stakeholders, committed volunteers and the Board of Directors.

Work on this plan began in fall 2008 with visioning focus groups held during and after the 2008 Annual Education Conference (AEC) in Los Angeles. These focus groups brought together members and external stakeholders to provide input on the landscape for genetics and genomics in the next several years and what NSGC needs to do to prepare our members for this future.

Following completion of the focus groups, the major themes that emerged from these discussions were used to develop the NSGC Vision Survey that was distributed in January 2009 to the full membership. Over 450 of you shared your thoughts about future priorities for NSGC and genetic counselors through this survey.

The focus group and survey information was provided as background to the Board of Directors along with representatives from ABGC, ACMG, ISONG and the Genetic Counseling Foundation who participated in the strategic planning process. The Board and organizational representatives went through a facilitated day-long session that resulted in development of a draft of the plan we are sharing with you today. The Board then continued to discuss and refine the plan, resulting in this final version.

The strategic initiatives as outlined in the plan will be used as a basis for our annual plan of work and charges to NSGC’s committees. This is an ambitious plan that will require significant financial resources along with substantial involvement by our members in all areas of NSGC. As a reminder this is not an absolute plan, but a living document that can be modified over the coming years should the landscape dictate the need change.

The Board appreciates your involvement in this process and we look forward to working with you on these strategic initiatives over the next three years.

To view the 2010-2012 Strategic Plan, please visit:

Steven Keiles, MS
NSGC President