What a wonderful, crazy busy, and exciting year we have had! To name only a few of our accomplishments, we’ve met with payers to discuss recognition of genetic counselors and reimbursement for our services, we’ve developed and published practice guidelines establishing ourselves as experts in providing optimal care, and we have 31 states in varied positions of pursuing or issuing state licenses! We have conducted several meetings on Capitol Hill with key members of Congress and congressional committees in an effort to garner support and provide education in pursuit of our legislation recognizing genetic counselors as independent healthcare providers. We’ve created position statements on important issues about which NSGC must have a position or take a stand. We’ve launched tool kits to aid genetic counselors in our self-marketing efforts and continued efforts to promote NSGC’s brand. Our education efforts have been extraordinary, cutting edge and technologically advanced; offering opportunities for all members and resulting in the largest, most successful AEC we’ve ever held!
So what’s in store for 2012? Our new rolling strategic plan, focusing on Access, promoting our Value, and addressing Workforce issues, will be put into action this year. We will continue in our efforts to achieve payer recognition at the state and national levels while demonstrating that genetic counselors are cost effective and efficient patient care providers. We will also demonstrate and promote the value of genetic counseling performed by genetic counselors. And as the demand for genetic counseling services by genetic counselors increases, we will develop workforce recommendations allowing us to meet these demands.
As you can see, we have accomplished so much, but have more to do! “Thank you” to all of you for your hard work on behalf of your organization, profession, and colleagues. You are incredibly talented, creative, and tireless and have brought us to where we are today. Keep up the good work!
It has been a privilege and honor for me to be our organization’s spokesperson in 2011. I have truly loved being involved in every aspect of our organization’s goals and initiatives and representing our incredible profession. It has been wonderful meeting and getting to know so many of you, our outstanding dynamic volunteers, who inspired me every step along the way. Thank you for the opportunity and making this a memorable experience.
Now it is time to turn the reins over to our 2012 president, Brenda Finucane. She will have her hands full with leading us in our 2012 initiatives and is well equipped to take on these charges. Brenda is inspiring, energetic, and charismatic and will lead us gracefully and boldly into the New Year!
Happy new year to all, and please join me in welcoming Brenda!
Saturday, December 31, 2011
Thursday, October 13, 2011
Attend the Late Breaking Session at the AEC!
Attend the Late Breaking Information Plenary: “Non-Invasive Prenatal Diagnosis: Clinical and Ethical Implications for Genetic Counselors.” While on first glance this is a prenatal topic, this session is important for EVEYRONE!
Last summer when we began discussions about a topic for the Late Breaking Session, I wasn’t sure that the Non-invasive Prenatal Diagnosis (NIPD) topic was one pertinent to all of our members, including me. I’ve never done prenatal counseling and my knowledge of the specialty is embarrassingly limited. In fact, during my first pregnancy when I was exploring prenatal testing options with my MFM, a colleague and friend, I knew so little she shook her head and said with a smile, “Thank God you’re not teaching my class [of GC students]!” So, if your prenatal knowledge is limited, you are not alone.
However, as I’ve learned more about NIPD in the last months, I’ve realized this topic is not only applicable to prenatal genetic counselors, it’s important for all of us. The technology may initially have a large impact on prenatal counselors’ practice as more patients may opt to pursue non-invasive testing. The patients, as well as the community OBs ordering the testing, may not know how to interpret the results they receive. Therefore, I expect prenatal counselors will definitely be busy. But the integration of NIPD as a potential standard of care in OB offices (and I’m making a lot of assumptions here) would impact our entire profession. All genetic counselors need to think through potential issues and implications for our profession. We need to explore questions such as: What are the pros and cons of this new technology? What are the risk and benefits to patients and families? What new aspects of genetic counseling practice will emerge? Will genetic counselors in other specialties be offering this reproductive option to families at risk for single gene disorders? How will genetic counselors be perceived by the community as we counsel patients about disorders identified by NIPD? Will we be seen as the experts to whom patients should obtain up to date and balanced information, or will we be seen as proponents of early prenatal diagnosis to eliminate “undesirable” diagnoses? What opportunities exist for genetic counselors to promote themselves as resources for physicians and patients as this technology is put into use?
What a long list of questions for us to ponder and explore together! Please join us at the Late Breaking Plenary Session on Sunday morning, October 30, at 8:30 am to discuss the implications of this topic for our profession as a whole as well the impact to your practice and specialty. Dr. Wayne Grody will provide an introduction and overview of the basic technology and its applications, Kelly Ormond, MS, CGC, will discuss the clinical and ethical aspects of the technology, and Patricia Devers, MS, CGC, will moderate a discussion with the speakers and audience. Additionally, if you are interested in learning more about the development of NIPD and the technology behind it, please attend the EBS on Friday afternoon at 1:00pm.
We look forward to seeing you soon in San Diego!
Last summer when we began discussions about a topic for the Late Breaking Session, I wasn’t sure that the Non-invasive Prenatal Diagnosis (NIPD) topic was one pertinent to all of our members, including me. I’ve never done prenatal counseling and my knowledge of the specialty is embarrassingly limited. In fact, during my first pregnancy when I was exploring prenatal testing options with my MFM, a colleague and friend, I knew so little she shook her head and said with a smile, “Thank God you’re not teaching my class [of GC students]!” So, if your prenatal knowledge is limited, you are not alone.
However, as I’ve learned more about NIPD in the last months, I’ve realized this topic is not only applicable to prenatal genetic counselors, it’s important for all of us. The technology may initially have a large impact on prenatal counselors’ practice as more patients may opt to pursue non-invasive testing. The patients, as well as the community OBs ordering the testing, may not know how to interpret the results they receive. Therefore, I expect prenatal counselors will definitely be busy. But the integration of NIPD as a potential standard of care in OB offices (and I’m making a lot of assumptions here) would impact our entire profession. All genetic counselors need to think through potential issues and implications for our profession. We need to explore questions such as: What are the pros and cons of this new technology? What are the risk and benefits to patients and families? What new aspects of genetic counseling practice will emerge? Will genetic counselors in other specialties be offering this reproductive option to families at risk for single gene disorders? How will genetic counselors be perceived by the community as we counsel patients about disorders identified by NIPD? Will we be seen as the experts to whom patients should obtain up to date and balanced information, or will we be seen as proponents of early prenatal diagnosis to eliminate “undesirable” diagnoses? What opportunities exist for genetic counselors to promote themselves as resources for physicians and patients as this technology is put into use?
What a long list of questions for us to ponder and explore together! Please join us at the Late Breaking Plenary Session on Sunday morning, October 30, at 8:30 am to discuss the implications of this topic for our profession as a whole as well the impact to your practice and specialty. Dr. Wayne Grody will provide an introduction and overview of the basic technology and its applications, Kelly Ormond, MS, CGC, will discuss the clinical and ethical aspects of the technology, and Patricia Devers, MS, CGC, will moderate a discussion with the speakers and audience. Additionally, if you are interested in learning more about the development of NIPD and the technology behind it, please attend the EBS on Friday afternoon at 1:00pm.
We look forward to seeing you soon in San Diego!
Friday, September 30, 2011
Why go to the AEC? What’s in it for you?
A few years ago I was speaking with a genetic counselor colleague about attending the NSGC Annual Education Conference (AEC). She stated that because she is so specialized perhaps the AEC was no longer a good fit for her as there were only a couple of sessions in her area. She felt she could gain additional education and CEUs at conferences focused only on her area of specialization. I was surprised at her comment because to me, the AEC is so much more than genetics education.
NSGC’s AEC is certainly focused on continuing genetics and genetic counseling education. As I browse our preliminary program, among other topics, I see sessions and presentations focused on gastric and prostate cancer, utilization of information technology, exploration of new technologies, and analysis of genetic information contributing to health behaviors. It is clear there are educational programs available to genetic counselors in all walks of life and specialty.
Our conference certainly prioritizes genetics science and counseling education and some of this content is available at other conferences. But what is absolutely unique about our AEC is that it provides all of this education and also includes significant content specific to the growth and professional development of genetic counselors. What exactly do I mean? Let me explain it with another question: If I am an experienced genetic counselor who can counsel a family on a multitude of different conditions, but I cannot effectively communicate the importance of genetic counselor licensure as well as the need to be an independent provider to my hospital credentialing committee, I am not able to promote myself and other genetic counselors as experienced professionals and critical members of the healthcare team. All my genetics knowledge will not help me, or anyone else, in that arena. As a result, I would not be contributing to the growth and development of the profession of genetic counseling within my institution and more broadly. I not only want to be a “good” genetic counselor, but I want to have broad knowledge of my profession and the issues facing us so that I am a “whole” or well-rounded genetics professional. The AEC is the only educational setting where we can obtain these professional development opportunities.
This year I encourage you to expand your attention at the AEC to not only the clinical and counseling content offered during the Plenary Sessions, Contributed Papers, Educational Breakout Sessions and posters, but also to the content focused on issues facing our profession. Come to the State of the Society, the NSGC and ABGC Business Meetings, the Professional Issues Panel and the Late Breaking Information Session. These sessions are important in that they highlight the activities of genetic counselors and your professional society in legislative and public policy efforts as well as provide information about upcoming professional issues and challenges. The goal of these sessions is to prepare you, as a genetic counselor, to deal with these issues in your practice and as a representative of your profession.
In addition to providing education about the science of genetics and further development of counseling expertise, our AEC is a gathering place for us as the unique professionals we are. No other educational conference can offer the educational programs tailored to our special skills and interests while also contributing to your professional development as a genetic counselor. And that’s what’s in it for you at the NSGC AEC!
NSGC’s AEC is certainly focused on continuing genetics and genetic counseling education. As I browse our preliminary program, among other topics, I see sessions and presentations focused on gastric and prostate cancer, utilization of information technology, exploration of new technologies, and analysis of genetic information contributing to health behaviors. It is clear there are educational programs available to genetic counselors in all walks of life and specialty.
Our conference certainly prioritizes genetics science and counseling education and some of this content is available at other conferences. But what is absolutely unique about our AEC is that it provides all of this education and also includes significant content specific to the growth and professional development of genetic counselors. What exactly do I mean? Let me explain it with another question: If I am an experienced genetic counselor who can counsel a family on a multitude of different conditions, but I cannot effectively communicate the importance of genetic counselor licensure as well as the need to be an independent provider to my hospital credentialing committee, I am not able to promote myself and other genetic counselors as experienced professionals and critical members of the healthcare team. All my genetics knowledge will not help me, or anyone else, in that arena. As a result, I would not be contributing to the growth and development of the profession of genetic counseling within my institution and more broadly. I not only want to be a “good” genetic counselor, but I want to have broad knowledge of my profession and the issues facing us so that I am a “whole” or well-rounded genetics professional. The AEC is the only educational setting where we can obtain these professional development opportunities.
This year I encourage you to expand your attention at the AEC to not only the clinical and counseling content offered during the Plenary Sessions, Contributed Papers, Educational Breakout Sessions and posters, but also to the content focused on issues facing our profession. Come to the State of the Society, the NSGC and ABGC Business Meetings, the Professional Issues Panel and the Late Breaking Information Session. These sessions are important in that they highlight the activities of genetic counselors and your professional society in legislative and public policy efforts as well as provide information about upcoming professional issues and challenges. The goal of these sessions is to prepare you, as a genetic counselor, to deal with these issues in your practice and as a representative of your profession.
In addition to providing education about the science of genetics and further development of counseling expertise, our AEC is a gathering place for us as the unique professionals we are. No other educational conference can offer the educational programs tailored to our special skills and interests while also contributing to your professional development as a genetic counselor. And that’s what’s in it for you at the NSGC AEC!
Tuesday, August 2, 2011
Genetic Alliance Day on the Hill and Annual Conference: A Wonderful Experience for Genetic Counselors
During this busy summer, I have spent some time traveling to different meetings. In late June, I was lucky to represent NSGC at the Genetic Alliance’s Day on the Hill as well as their Annual Conference.
During the Day on the Hill our task was to visit with legislator’s staff members and educate them on legislative issues of great importance to the Genetic Alliance, advocacy groups, healthcare providers, and patients and their family members. We were organized into regional groups with an experienced leader from the Genetic Alliance and met with staff members of Congressmen from our regions. We were coached and guided on talking points about the key issues by our well versed group leaders. Like many of you, I had never been to the offices of our legislators and was nervous and excited to see where the “action” of our government takes place. I was especially excited to contribute, even in a small amount, to those actions. My group leader was NSGC Past President Diane Baker who was a fabulous mentor. She showed us how to present the information in concise yet complete summaries and when possible bring in examples of how legislator’s constituents could be affected by these bills. I had the opportunity to also let these staff members know that NSGC is in the process of introducing a bill to amend the Social Security Act to allow genetic counselors to be billable healthcare providers under the Centers for Medicare and Medicaid Services.
During the Day on the Hill, I learned much about some important issues that we need to open our legislators’ eyes to, and I also learned not to be intimidated or anxious about approaching these individuals with our issues. They need us to provide background and information about these issues in order to cast a meaningful vote. Legislators want to hear from us and were gracious and interested in our issues. Our legislators need you to tell them what is important to you, your organization, and your patients and families!
During the Genetic Alliance conference I was a member of a panel in a symposium titled, “Services Day.” The purpose of this workshop was for participants to come away with action items for how to collaborate and advocate across communities, conditions, and state lines. As a result we will all be better prepared to forge the future for services centered on the health and wellbeing of families. An exceptional group of presenters on a wide variety of topics resulted in this being an uplifting, inspiring day. As a pediatric genetic counselor, I learned much in terms of available services, contacts for the families with whom I work, and possible improved clinic models. I chastised myself for not attending this conference in the past –the greater number of patients I could have supported with this information if I’d been attending and learning from this conference for so many years! I also had the opportunity to educate conference participants on what genetic counselors do and some of the services we provide.
Participating in the Genetic Alliance conference events was a wonderful opportunity for me to represent NSGC and genetic counselors and to learn from the other individuals at the conference. I would encourage all genetic counselors to attend the Genetic Alliance conference and to participate in a Day on the Hill through the Genetic Alliance or another organization, at least once in your career.
During the Day on the Hill our task was to visit with legislator’s staff members and educate them on legislative issues of great importance to the Genetic Alliance, advocacy groups, healthcare providers, and patients and their family members. We were organized into regional groups with an experienced leader from the Genetic Alliance and met with staff members of Congressmen from our regions. We were coached and guided on talking points about the key issues by our well versed group leaders. Like many of you, I had never been to the offices of our legislators and was nervous and excited to see where the “action” of our government takes place. I was especially excited to contribute, even in a small amount, to those actions. My group leader was NSGC Past President Diane Baker who was a fabulous mentor. She showed us how to present the information in concise yet complete summaries and when possible bring in examples of how legislator’s constituents could be affected by these bills. I had the opportunity to also let these staff members know that NSGC is in the process of introducing a bill to amend the Social Security Act to allow genetic counselors to be billable healthcare providers under the Centers for Medicare and Medicaid Services.
During the Day on the Hill, I learned much about some important issues that we need to open our legislators’ eyes to, and I also learned not to be intimidated or anxious about approaching these individuals with our issues. They need us to provide background and information about these issues in order to cast a meaningful vote. Legislators want to hear from us and were gracious and interested in our issues. Our legislators need you to tell them what is important to you, your organization, and your patients and families!
During the Genetic Alliance conference I was a member of a panel in a symposium titled, “Services Day.” The purpose of this workshop was for participants to come away with action items for how to collaborate and advocate across communities, conditions, and state lines. As a result we will all be better prepared to forge the future for services centered on the health and wellbeing of families. An exceptional group of presenters on a wide variety of topics resulted in this being an uplifting, inspiring day. As a pediatric genetic counselor, I learned much in terms of available services, contacts for the families with whom I work, and possible improved clinic models. I chastised myself for not attending this conference in the past –the greater number of patients I could have supported with this information if I’d been attending and learning from this conference for so many years! I also had the opportunity to educate conference participants on what genetic counselors do and some of the services we provide.
Participating in the Genetic Alliance conference events was a wonderful opportunity for me to represent NSGC and genetic counselors and to learn from the other individuals at the conference. I would encourage all genetic counselors to attend the Genetic Alliance conference and to participate in a Day on the Hill through the Genetic Alliance or another organization, at least once in your career.
Thursday, June 9, 2011
Update from the Genetic Counseling Advanced Degree Task Force
The update below is a guest post from the Genetic Counseling Advanced Degree Task Force.
The Genetic Counseling Advanced Degree Task Force (GCADTF), with representatives from the American Board of Genetic Counseling, the Association of Genetic Counseling Program Directors, the Canadian Association of Genetic Counsellors Certification Board, the Canadian Association of Genetic Counsellors, and the National Society of Genetic Counselors, held its second meeting on May 25th. As reported previously, this group is tasked with exploring the potential benefits and limitations of an advanced clinical degree in genetic counseling, including the Clinical Doctorate. Since the last announcement in March, the GCADTF has been unable to identify resources that would allow for the original proposal of hosting a summit focused on this topic. Therefore the GCADTF developed a lower cost means of educating our various members using a Webinar format. This is a complicated issue and it is vital that there be a knowledgeable discussion among our members.
The Webinar, tentatively planned for later this summer, will spell out several issues that must be considered if a profession chooses to move to a Clinical Doctorate degree. It will include information about issues relevant to students contemplating the genetic counseling profession, practicing genetic counselors, training programs and more. The Webinar will be hosted more than once so that ideally everyone who wishes to participate will be able to do so. In addition, we plan for:
1. Brief facilitated discussions to follow each Webinar where there will be an opportunity to submit comments.
2. An on-line survey for comments to be posted after each Webinar.
3. Additional electronic forums where interested stakeholders can submit comments.
Watch for further announcements and be part of this very important conversation!
Of course if you have any questions, feel free to contact a GCADTF representative!
Debra Lochner Doyle, MS, CGC (ABGC)
Holly Peay, MS, CGC (ABGC)
Sheila O'Neal (ABGC)
Jaspreet Sekhon-Warren, MS, CGC (CAGC)
Stephanie Kieffer, MS, CGC (CAGC Certification Board)
Jennifer Fitzpatrick, MS, CGC (AGCPD – Canadian Programs)
Casey Reiser, MS, CGC (AGCPD)
Laura Conway, MS, PhD CGC (AGCPD)
Carol Walton MS, CGC (AGCPD)
Karin Dent, MS, CGC (NSGC)
Brenda Finucane, MS, CGC (NSGC)
Meghan Carey (NSGC)
The Genetic Counseling Advanced Degree Task Force (GCADTF), with representatives from the American Board of Genetic Counseling, the Association of Genetic Counseling Program Directors, the Canadian Association of Genetic Counsellors Certification Board, the Canadian Association of Genetic Counsellors, and the National Society of Genetic Counselors, held its second meeting on May 25th. As reported previously, this group is tasked with exploring the potential benefits and limitations of an advanced clinical degree in genetic counseling, including the Clinical Doctorate. Since the last announcement in March, the GCADTF has been unable to identify resources that would allow for the original proposal of hosting a summit focused on this topic. Therefore the GCADTF developed a lower cost means of educating our various members using a Webinar format. This is a complicated issue and it is vital that there be a knowledgeable discussion among our members.
The Webinar, tentatively planned for later this summer, will spell out several issues that must be considered if a profession chooses to move to a Clinical Doctorate degree. It will include information about issues relevant to students contemplating the genetic counseling profession, practicing genetic counselors, training programs and more. The Webinar will be hosted more than once so that ideally everyone who wishes to participate will be able to do so. In addition, we plan for:
1. Brief facilitated discussions to follow each Webinar where there will be an opportunity to submit comments.
2. An on-line survey for comments to be posted after each Webinar.
3. Additional electronic forums where interested stakeholders can submit comments.
Watch for further announcements and be part of this very important conversation!
Of course if you have any questions, feel free to contact a GCADTF representative!
Debra Lochner Doyle, MS, CGC (ABGC)
Holly Peay, MS, CGC (ABGC)
Sheila O'Neal (ABGC)
Jaspreet Sekhon-Warren, MS, CGC (CAGC)
Stephanie Kieffer, MS, CGC (CAGC Certification Board)
Jennifer Fitzpatrick, MS, CGC (AGCPD – Canadian Programs)
Casey Reiser, MS, CGC (AGCPD)
Laura Conway, MS, PhD CGC (AGCPD)
Carol Walton MS, CGC (AGCPD)
Karin Dent, MS, CGC (NSGC)
Brenda Finucane, MS, CGC (NSGC)
Meghan Carey (NSGC)
Thursday, May 26, 2011
The Next Match Phase for the Mentor Program
Submitted by Emily Malouf and Kaylene Ready on behalf of the Mentor Program Sub-committee of NSGC’s Membership Committee
As the current Mentor Phase of the Mentor Program comes to a close, Megan Grove, a graduate student and mentee in the program, shares this about her experience:
“Participating in the mentor program has been a fantastic experience. Whether she was providing me with examples of personal genetic counseling experiences, lending advice or tips with regard to important milestones in training and beyond, or simply being someone I could talk to and debrief with; my mentor has been an incredible supporter and teacher. I am grateful for the opportunity to participate in this program, and have learned a lot in the process!”
Next month brings another opportunity for NSGC members to participate in a mentoring relationship:
The NSGC Membership Committee announces the next match phase for the Mentor Program begins in June 2011.
The program is designed to enhance networking opportunities for the NSGC’s members, for both students and practicing genetic counselors. Mentors can offer support, guidance, and insight while mentees can seek advice from peers, learn about a new specialty, and network professionally. Mentees can choose from a variety of selection criteria to find a mentor who best meets their needs and self-match to a mentor through an online matching website. Discussion topics are also provided on a monthly basis to facilitate continued communication.
While having a mentor through the Mentor Program is valuable for genetic counseling students and new graduates, it also has been a great resource for working genetic counselors wanting guidance in their current role, starting a new position, or considering a specialty change.
Mentors have also benefited from participating in a mentoring relationship. For busy counselors who are uncertain about the benefit of serving as a mentor, consider Holly Zimmerman’s experience:
“Being a mentor gives you the opportunity to reflect on your own career and experiences as well as the chance to renew your passion for the profession through the enthusiasm of someone new entering the field. I have thoroughly enjoyed mentoring a first year student and hearing her sincere excitement as she journeys through her training to become a genetic counselor."
If you are ready to get involved in the Mentor Program, mentor sign-up begins June 1, 2011 and mentee sign-up begins June 16, 2011! Mentors and mentees of all ages, years of experience and areas of specialty are needed to make the Program a success. The time commitment for participation can be as short as four months or as long as twelve months, and mentors and mentees will decide how often they will contact one another. Look for e-Blasts in June announcing enrollment periods.
To join the NSGC Mentor Program, please visit www.nsgcmentor.org.
As the current Mentor Phase of the Mentor Program comes to a close, Megan Grove, a graduate student and mentee in the program, shares this about her experience:
“Participating in the mentor program has been a fantastic experience. Whether she was providing me with examples of personal genetic counseling experiences, lending advice or tips with regard to important milestones in training and beyond, or simply being someone I could talk to and debrief with; my mentor has been an incredible supporter and teacher. I am grateful for the opportunity to participate in this program, and have learned a lot in the process!”
Next month brings another opportunity for NSGC members to participate in a mentoring relationship:
The NSGC Membership Committee announces the next match phase for the Mentor Program begins in June 2011.
The program is designed to enhance networking opportunities for the NSGC’s members, for both students and practicing genetic counselors. Mentors can offer support, guidance, and insight while mentees can seek advice from peers, learn about a new specialty, and network professionally. Mentees can choose from a variety of selection criteria to find a mentor who best meets their needs and self-match to a mentor through an online matching website. Discussion topics are also provided on a monthly basis to facilitate continued communication.
While having a mentor through the Mentor Program is valuable for genetic counseling students and new graduates, it also has been a great resource for working genetic counselors wanting guidance in their current role, starting a new position, or considering a specialty change.
Mentors have also benefited from participating in a mentoring relationship. For busy counselors who are uncertain about the benefit of serving as a mentor, consider Holly Zimmerman’s experience:
“Being a mentor gives you the opportunity to reflect on your own career and experiences as well as the chance to renew your passion for the profession through the enthusiasm of someone new entering the field. I have thoroughly enjoyed mentoring a first year student and hearing her sincere excitement as she journeys through her training to become a genetic counselor."
If you are ready to get involved in the Mentor Program, mentor sign-up begins June 1, 2011 and mentee sign-up begins June 16, 2011! Mentors and mentees of all ages, years of experience and areas of specialty are needed to make the Program a success. The time commitment for participation can be as short as four months or as long as twelve months, and mentors and mentees will decide how often they will contact one another. Look for e-Blasts in June announcing enrollment periods.
To join the NSGC Mentor Program, please visit www.nsgcmentor.org.
Thursday, May 12, 2011
NSGC's New Discussion Forums
This is a guest post from NSGC Communications Committee Chair, Amy Sturm.
For those of you who don’t know me, I am the current Chair of the NSGC Communications Committee. One of the Committee’s unofficial charges this year was to head up the transition from the current NSGC listservs to a newer technology called Discussion Forums. We established the Discussion Forums Task Force after the AEC in late Fall 2010, and have been working since then to learn how the forums work, test their functionality, and develop Frequently Asked Questions and How To’s Documents for the NSGC membership. These resource documents are now on the NSGC website under Member Center after you log in: http://www.nsgc.org/MemberCenter/DiscussionForums/tabid/390/Default.aspx.
Task Force members also recently recorded short webinars to guide members through topics including how to navigate the forums, set your own personal forum settings, receive messages in digest format if preferred, post and reply to forums, include attachments, search forums, and other enhanced features. These webinars are also live on the NSGC website under Member Center.
I have to admit, at first I wasn’t sure what to expect from forum technology, since I had never used forums previously to using the NSGC forums. My husband frequents forums daily, such as slickdeals.net, in order to search for the best online deals, coupons, and discounts on computer equipment among many other products; however he also works in the field of Information Technology, so I wasn’t immediately convinced that forums would work for me. I am a member of five NSGC SIGs and also receive the general NSGC listserv, so receiving listserv messages in digest format is very important to me as well as easy posting and replying capabilities!
Luckily, I found out that the new forums technology is not all that different from the current listservs that we have all become accustomed to over the years. For example, if you choose to subscribe to an individual forum, such as a SIG-specific forum (e.g. Cardiovascular Genetics SIG Forum), you will automatically receive all new posts and replies to that forum in your email’s Inbox. You can also sign up for daily or weekly digests if this is more manageable for you compared to receiving each post and reply as an individual email.
Another very nice feature of the forums is something called “threaded topics”. This means that all posts and replies to that initial post are organized together under something called a discussion thread. This allows for a very organized view of forum topics and improved ease of tracking and being able to follow the conversation.
While the archives from the current listserv, which date back to 2006, will no longer be accessible, please remember that you will be able to post a new topic to the Discussion Forums at any time and receive responses from your NSGC colleagues with the most up-to-date information. The deadline to access the current archives will be extended to June 30, 2011. Please refer all questions to the Executive Office at nsgc@nsgc.org.
For those of you who don’t know me, I am the current Chair of the NSGC Communications Committee. One of the Committee’s unofficial charges this year was to head up the transition from the current NSGC listservs to a newer technology called Discussion Forums. We established the Discussion Forums Task Force after the AEC in late Fall 2010, and have been working since then to learn how the forums work, test their functionality, and develop Frequently Asked Questions and How To’s Documents for the NSGC membership. These resource documents are now on the NSGC website under Member Center after you log in: http://www.nsgc.org/MemberCenter/DiscussionForums/tabid/390/Default.aspx.
Task Force members also recently recorded short webinars to guide members through topics including how to navigate the forums, set your own personal forum settings, receive messages in digest format if preferred, post and reply to forums, include attachments, search forums, and other enhanced features. These webinars are also live on the NSGC website under Member Center.
I have to admit, at first I wasn’t sure what to expect from forum technology, since I had never used forums previously to using the NSGC forums. My husband frequents forums daily, such as slickdeals.net, in order to search for the best online deals, coupons, and discounts on computer equipment among many other products; however he also works in the field of Information Technology, so I wasn’t immediately convinced that forums would work for me. I am a member of five NSGC SIGs and also receive the general NSGC listserv, so receiving listserv messages in digest format is very important to me as well as easy posting and replying capabilities!
Luckily, I found out that the new forums technology is not all that different from the current listservs that we have all become accustomed to over the years. For example, if you choose to subscribe to an individual forum, such as a SIG-specific forum (e.g. Cardiovascular Genetics SIG Forum), you will automatically receive all new posts and replies to that forum in your email’s Inbox. You can also sign up for daily or weekly digests if this is more manageable for you compared to receiving each post and reply as an individual email.
Another very nice feature of the forums is something called “threaded topics”. This means that all posts and replies to that initial post are organized together under something called a discussion thread. This allows for a very organized view of forum topics and improved ease of tracking and being able to follow the conversation.
While the archives from the current listserv, which date back to 2006, will no longer be accessible, please remember that you will be able to post a new topic to the Discussion Forums at any time and receive responses from your NSGC colleagues with the most up-to-date information. The deadline to access the current archives will be extended to June 30, 2011. Please refer all questions to the Executive Office at nsgc@nsgc.org.
Friday, April 15, 2011
NSGC Meets with United Healthcare
One of NSGC’s strategic initiatives is to demonstrate to payers the cost-effectiveness and improved patient outcomes realized by the involvement of genetic counselors in patient care. In an effort to further this initiative, NSGC representatives met with Dr. Lee Newcomer, Senior Vice President of Oncology for United Healthcare (UHC), on Monday, April 11th. In addition to oncology, Dr. Newcomer also oversees women’s health and genetics for UHC. The purpose of this meeting was to inform UHC about the role genetic counselors can play in helping payers develop appropriate policies around coverage and utilization of services, discuss payer credentialing of genetic counselors, and explore general ideas on areas for research collaboration.
We presented data demonstrating that genetic counselors improve the quality of patient care, stabilize and reduce payer costs, and improve both patient and provider satisfaction. Dr. Newcomer and his team are extremely knowledgeable about the current environment in genetic medicine and it was clear that they recognize genetic counselors as preferred providers of genetic counseling. He expressed a keen awareness of the expanding need for genetic counselor services as UHC evolves their coverage policies over the next two years. . Dr. Newcomer also recognizes genetic counselors’ unique expertise as a valuable resource in determining clinical validity and utility of testing and in patient and provider education.
We will be working with UHC in the future to provide them with information that may help their decision making. We are encouraged by this productive meeting with the UHC team. Stay tuned as we report back on our continued outreach to regional and national payers!
We presented data demonstrating that genetic counselors improve the quality of patient care, stabilize and reduce payer costs, and improve both patient and provider satisfaction. Dr. Newcomer and his team are extremely knowledgeable about the current environment in genetic medicine and it was clear that they recognize genetic counselors as preferred providers of genetic counseling. He expressed a keen awareness of the expanding need for genetic counselor services as UHC evolves their coverage policies over the next two years. . Dr. Newcomer also recognizes genetic counselors’ unique expertise as a valuable resource in determining clinical validity and utility of testing and in patient and provider education.
We will be working with UHC in the future to provide them with information that may help their decision making. We are encouraged by this productive meeting with the UHC team. Stay tuned as we report back on our continued outreach to regional and national payers!
Friday, March 25, 2011
Exploring Advanced Degree Options for Genetic Counselors
The Genetic Counseling Advanced Degree Taskforce (GCADT) was formed to explore possible advanced degree options for the genetic counseling profession. The GCADT is comprised of representatives from the American Board of Genetic Counseling, the National Society of Genetic Counselors, and the Association of Genetic Counseling Program Directors. Representatives from the Canadian Association of Genetic Counselors were invited to this meeting and attended as observers. The taskforce held its initial meeting on Wednesday, March 16, 2011 while at the American College of Medical Genetics annual educational conference.
A lengthy and robust discussion occurred and the group outlined plans to pursue capturing greater input about advanced degree options from the many stakeholders that would be affected. More information will be gathered and shared as steps are finalized including opportunities where GCADT will be asking for your input.
Thank you for your attention to this important professional discussion.
The Genetic Counseling Advanced Degree Task Force
American Board of Genetic Counseling: Deb Lochner Doyle, Holly Peay, and Sheila O'Neal
Association of Genetic Counseling Program Directors: Laura Conway, Casey Reiser, and Carol Walton
Canadian Association of Genetic Counselors: Carol Cremin
Canadian Certification Committee: Stephanie Kieffer
Canadian Genetic Counseling Programs: Jennifer Fitzpatrick
National Society of Genetic Counselors: Karin Dent and Meghan Carey
A lengthy and robust discussion occurred and the group outlined plans to pursue capturing greater input about advanced degree options from the many stakeholders that would be affected. More information will be gathered and shared as steps are finalized including opportunities where GCADT will be asking for your input.
Thank you for your attention to this important professional discussion.
The Genetic Counseling Advanced Degree Task Force
American Board of Genetic Counseling: Deb Lochner Doyle, Holly Peay, and Sheila O'Neal
Association of Genetic Counseling Program Directors: Laura Conway, Casey Reiser, and Carol Walton
Canadian Association of Genetic Counselors: Carol Cremin
Canadian Certification Committee: Stephanie Kieffer
Canadian Genetic Counseling Programs: Jennifer Fitzpatrick
National Society of Genetic Counselors: Karin Dent and Meghan Carey
Wednesday, March 2, 2011
Nominate Yourself or a Colleague for the 2012 Board of Directors!
Are you interested in becoming a volunteer leader for the NSGC? Have you ever thought, “Why didn’t they ask me?” when you have much to contribute? Or, do you work with someone whose leadership skills would be as much of an asset to our society as they are to our profession? Have you wondered, “Why haven’t they been nominated for the NSGC Board?”
If so, it is time for you to nominate yourself, a respected colleague or mentor to the 2012 Board of Directors. Nominations open on March 4th. Your nomination is your voice in NSGC leadership, the governance of your society. We need you to identify excited individuals who will thoughtfully steer our organization through the challenges of the evolving healthcare field. Take the time to acknowledge your own leadership skills and talents or recognize those of your colleagues and mentors! Invite them to take on the challenge of representing and leading your professional organization by nominating them to the 2012 Board.
Every individual who is nominated and accepts the nomination is considered by the Nominating Committee (comprised of current Board members and two NSGC members at large). All nominated individuals submit answers to written interview questions then have a telephone interview with a member of the Nominating Committee. After all interviews are completed, the Nominating Committee has the difficult task of selecting a slate for the 2012 Board of Directors. The slate must round out a Board representing the diverse skills and talents of our members in conjunction with the leadership skills, professional experiences and interest required to guide our unique society. It is important to note that nominees not selected for the 2012 Board of Directors slate may be invited to participate in other volunteer leader positions if interested. These positions may include leadership of a committee or task force, or other opportunities within our busy organization.
Nominating yourself or a fellow NSGC member is easy. Simply click on the Member Center home page on the NSGC website (http://www.nsgc.org/MemberCenter/2011CallforNominations/tabid/379/Default.aspx)
and follow the link to the nominations page. You will be asked to enter the nominee’s name and your comments about the skills and experience the nominee (you or your colleague) would contribute to the NSGC Board of Directors.
Volunteering for the NSGC Board of Directors is a rewarding experience. I have found that embracing challenges presented in my Board service stretches me in new and different ways and has resulted in additional personal and professional growth. I have been able to apply the skills I have gained in the varied aspects of my clinical, research, and teaching career, and I believe they will help me in any future pursuit as well.
If so, it is time for you to nominate yourself, a respected colleague or mentor to the 2012 Board of Directors. Nominations open on March 4th. Your nomination is your voice in NSGC leadership, the governance of your society. We need you to identify excited individuals who will thoughtfully steer our organization through the challenges of the evolving healthcare field. Take the time to acknowledge your own leadership skills and talents or recognize those of your colleagues and mentors! Invite them to take on the challenge of representing and leading your professional organization by nominating them to the 2012 Board.
Every individual who is nominated and accepts the nomination is considered by the Nominating Committee (comprised of current Board members and two NSGC members at large). All nominated individuals submit answers to written interview questions then have a telephone interview with a member of the Nominating Committee. After all interviews are completed, the Nominating Committee has the difficult task of selecting a slate for the 2012 Board of Directors. The slate must round out a Board representing the diverse skills and talents of our members in conjunction with the leadership skills, professional experiences and interest required to guide our unique society. It is important to note that nominees not selected for the 2012 Board of Directors slate may be invited to participate in other volunteer leader positions if interested. These positions may include leadership of a committee or task force, or other opportunities within our busy organization.
Nominating yourself or a fellow NSGC member is easy. Simply click on the Member Center home page on the NSGC website (http://www.nsgc.org/MemberCenter/2011CallforNominations/tabid/379/Default.aspx)
and follow the link to the nominations page. You will be asked to enter the nominee’s name and your comments about the skills and experience the nominee (you or your colleague) would contribute to the NSGC Board of Directors.
Volunteering for the NSGC Board of Directors is a rewarding experience. I have found that embracing challenges presented in my Board service stretches me in new and different ways and has resulted in additional personal and professional growth. I have been able to apply the skills I have gained in the varied aspects of my clinical, research, and teaching career, and I believe they will help me in any future pursuit as well.
Monday, February 21, 2011
Collaborative Genetic Services Summit
Below is a guest post from Angela Trepanier, Past President of NSGC and former Treasurer of the Genetic Counseling Foundation.
How often have you heard that there are not enough genetic counselors to provide the genetic counseling services needed? How often have you heard about the importance of other health care providers getting involved in genetics services so that consumers have adequate access? Have you figured out an effective way to triage genetics services with other providers in your community? Have you dealt with the consequences of ineffective triage- clients having the wrong genetic tests or being inadequately informed about genetic risk? What can the NSGC do to help genetic counselors develop successful strategies for triaging services while avoiding the ineffectual ones?
To address these issues NSGC is hosting a Collaborative Genetics Services Summit in mid-to-late summer 2011. Using funds raised by the now dormant Genetic Counseling Foundation*, the NSGC will bring together genetics professionals, nurses, physician assistants, primary care and specialty physicians, pharmacists, industry representatives, advocates, and other relevant stakeholders to develop competency and evidence-based models for integrating genetics and genomics into health care. Physician assistants and nurses were chosen specifically because each group has already developed competencies related to genetics/genomics. The primary outcome of the Summit will be a consensus model(s) for triaging genomic services which can be applied practically in the clinical setting to increase appropriate access to these services. A potential secondary outcome is identification of important gaps in evidence and in the genetics competencies of various health care providers needed to support the model.
Draft triage models for five genomic indications will be developed by multidisciplinary Work Groups, under the direction of and with input from the project’s Investigators and Advisory Committee. The indications include: 1) High-throughput population-based carrier screening; 2) Cancer genetic risk assessment and testing using Lynch syndrome tumor tissue screening and testing as a model; 3) Pharmacogenomic testing; 4) Diagnosis of a congenital syndrome through full genome sequencing in the newborn period; and 5) Genomic profiling. These indications were chosen because they are representative of the majority of services that are currently offered or will be offered in the future through full genome sequencing.
Once developed, the draft models will then be vetted by a larger audience of stakeholders at a one and one half day Collaborative Genetics Services Summit in Washington D.C. Feedback from the Summit will be incorporated and a draft white paper with the proposed triage model(s) will be written. The paper will be disseminated to key professional and advocacy organizations for review. Additional modifications may be made based on feedback, and a manuscript that delineates a model triage plan(s), including limitations and barriers to implementation, will be submitted for publication and distribution in 2012. The Investigators, with input from the Advisory Committee, will then begin to develop plans for a second phase of the project that will address identified barriers to implementing the model triage plan. More detailed information about the Summit will be available in the spring issue of Perspectives.
The NSGC’s vision is to integrate genetics and genomics to improve health for all. We think that the outcomes of this project could be an important step in achieving this vision and that genetic counselors, are the professionals best suited to pull together this collaborative effort.
*The GCF has been placed in a dormant state in 2011 and beyond. This means that all active fundraising will halt. However, the Audrey Heimler Special Projects Fund and George Tiller Memorial Fund will remain under the GCF, so donors who wish to continue making tax-deductible donations can do so. In the event that an organization wishes to make a large donation toward the Summit or another future NSGC project that requires tax-deductible status, the GCF would still exist to accommodate the donation.
How often have you heard that there are not enough genetic counselors to provide the genetic counseling services needed? How often have you heard about the importance of other health care providers getting involved in genetics services so that consumers have adequate access? Have you figured out an effective way to triage genetics services with other providers in your community? Have you dealt with the consequences of ineffective triage- clients having the wrong genetic tests or being inadequately informed about genetic risk? What can the NSGC do to help genetic counselors develop successful strategies for triaging services while avoiding the ineffectual ones?
To address these issues NSGC is hosting a Collaborative Genetics Services Summit in mid-to-late summer 2011. Using funds raised by the now dormant Genetic Counseling Foundation*, the NSGC will bring together genetics professionals, nurses, physician assistants, primary care and specialty physicians, pharmacists, industry representatives, advocates, and other relevant stakeholders to develop competency and evidence-based models for integrating genetics and genomics into health care. Physician assistants and nurses were chosen specifically because each group has already developed competencies related to genetics/genomics. The primary outcome of the Summit will be a consensus model(s) for triaging genomic services which can be applied practically in the clinical setting to increase appropriate access to these services. A potential secondary outcome is identification of important gaps in evidence and in the genetics competencies of various health care providers needed to support the model.
Draft triage models for five genomic indications will be developed by multidisciplinary Work Groups, under the direction of and with input from the project’s Investigators and Advisory Committee. The indications include: 1) High-throughput population-based carrier screening; 2) Cancer genetic risk assessment and testing using Lynch syndrome tumor tissue screening and testing as a model; 3) Pharmacogenomic testing; 4) Diagnosis of a congenital syndrome through full genome sequencing in the newborn period; and 5) Genomic profiling. These indications were chosen because they are representative of the majority of services that are currently offered or will be offered in the future through full genome sequencing.
Once developed, the draft models will then be vetted by a larger audience of stakeholders at a one and one half day Collaborative Genetics Services Summit in Washington D.C. Feedback from the Summit will be incorporated and a draft white paper with the proposed triage model(s) will be written. The paper will be disseminated to key professional and advocacy organizations for review. Additional modifications may be made based on feedback, and a manuscript that delineates a model triage plan(s), including limitations and barriers to implementation, will be submitted for publication and distribution in 2012. The Investigators, with input from the Advisory Committee, will then begin to develop plans for a second phase of the project that will address identified barriers to implementing the model triage plan. More detailed information about the Summit will be available in the spring issue of Perspectives.
The NSGC’s vision is to integrate genetics and genomics to improve health for all. We think that the outcomes of this project could be an important step in achieving this vision and that genetic counselors, are the professionals best suited to pull together this collaborative effort.
*The GCF has been placed in a dormant state in 2011 and beyond. This means that all active fundraising will halt. However, the Audrey Heimler Special Projects Fund and George Tiller Memorial Fund will remain under the GCF, so donors who wish to continue making tax-deductible donations can do so. In the event that an organization wishes to make a large donation toward the Summit or another future NSGC project that requires tax-deductible status, the GCF would still exist to accommodate the donation.
Friday, January 21, 2011
A New Beginning
Hello Everyone! I am excited to begin my term as President of NSGC for 2011. I want to start with a big thank you to Liz Kearney whose term as President just came to an end. Liz is an exceptionally dedicated, thoughtful, and inspiring leader. She accomplished so much during her presidency and I sincerely thank Liz for her leadership and mentorship. NSGC has benefited greatly from her talents.
Looking back on the accomplishments and initiatives we started in 2010 helps direct us in looking forward to 2011. Together, we have done so much…but there is still much to do! We have a new vision to strive to meet and a solid mission and strategic plan to guide us. Below are some highlights of the activity currently taking place:
Looking back on the accomplishments and initiatives we started in 2010 helps direct us in looking forward to 2011. Together, we have done so much…but there is still much to do! We have a new vision to strive to meet and a solid mission and strategic plan to guide us. Below are some highlights of the activity currently taking place:
As I mentioned in my blog in November, we have a new SIG plan to enhance utilization of the unique abilities and resources that exist in SIGs. We already have one new SIG beginning in 2011 (the Health Information and Technology SIG) and several SIGs examining their mission and assessing member needs to better direct their educational efforts and 2011 activity.So what else do I see in store for us this year? I see us rising to meet the challenges presented by the incorporation of genomic medicine into healthcare. Many of these challenges we are anticipating and are prepared to meet, others may be surprises. We have an excited and engaged Board of Directors who is thoughtful and thorough in their approach to thinking through issues. And, we have a dedicated and talented membership to help meet these challenges. A wonderful new year is off to a great start, and it promises to be very busy. We have much to do this year and are looking forward to working with all of you!
In February, our Board of Directors will convene in Chicago to conduct a long term strategic planning session. The purpose of this meeting is to develop a long term strategic plan for NSGC. A long term plan is necessary to ensure we are proactive in meeting the diverse needs of our members, those of our target audience of physicians and healthcare providers, and our patient population. We are seeking input from stakeholders in genetics, healthcare and industry to help inform our discussion. During the session we will examine challenging questions such as: “What are the important issues facing the genetic counseling profession in the next several years?” and ”What should NSGC become to help genetic counselors prepare for this future?” This promises to be a thought-provoking and lively discussion as we consider the needs of our members in relation to the future of genetics in healthcare.
The Collaborative Genetic Services Summit is in development with the important goal of establishing a collaborative model for genetics specialists, healthcare providers, and other key stakeholders to integrate genetics and genomics into healthcare. Past President Angie Trepanier is leading this multidisciplinary effort, bringing together key stakeholders in ensuring patients have access to quality genetic and genomic services. You will hear more about this exciting project in the near future.
Additionally, as you are no doubt aware, the political climate in our country has changed. We are working within this new climate and are actively engaged in discussions with potential sponsors for our federal bill to recognize genetic counselors as covered providers by CMS (Centers for Medicare and Medicaid Services). We are also working with regional and national payers to communicate the benefit of covering the services provided by genetic counselors and of course, continuing our support of licensure efforts as they continue in many states.
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.
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.
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.
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!
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.
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.
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/.
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.
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.
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