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.