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
Friday, March 25, 2011
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.
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