Obtaining funding can expand your professional network and resources and improve your research portfolio, the panelists explained. Adam Buchanan, MS, MPH, CGC, kicked off the session by sharing his trajectory from genetic counselor training to a more research-oriented career. Along the way, he learned the value of starting with a real-life clinical need when articulating a research question and building out an approach to study it. Once the question has been identified, he said, important next steps include brainstorming with colleagues, assembling a research team and preliminary data, choosing a funding mechanism, and writing and revising specific aims.
Team science and a mutually respectful approach were also key themes for the next presenter, Robert Green, MD, MPH. “I have always relied on the competence of genetic counselors,” he said, describing aspects of a genetic counseling background that make counselors particularly effective as research project managers. These include strong writing and interpersonal communication, a clinical care mindset, and a deep knowledge of genomics.
Toni Pollin, MS, PhD, CGC, shared specific tips for obtaining research funding as a genetic counselor. A combination of knowledge, feedback, and good planning are critical, she explained, placing special emphasis on choosing collaborators widely and wisely. Even if difficult to hear, feedback from mentors and colleagues helps those seeking funding to strengthen their knowledge – and in so doing, strengthen their grant applications. To successfully incorporate this feedback, it is important to start early and allow plenty of time for revisions.
Rounding out the session, Ebony Madden, MSGC, PhD, walked attendees through the NIH grant review process, citing points along the way where conversation with a program officer can be especially helpful. Though they are not directly involved in scoring grant applications, program officers know the intention and goals behind funding opportunities, Dr. Madden explained. Reaching out to them can help applicants identify (and highlight) the most promising aspects of their own work, as well as respond effectively to feedback when resubmitting an application.
Missed the session and want to learn more? This session was recorded and will be available online after the Annual Meeting.
ASHG and the American College of Medical Genetics and Genomics (ACMG) have partnered together to launch a series of congressional briefings on Capitol Hill to educate Congress on the importance of genetics and genomics research and medicine. Congressional briefings provide an opportunity for organizations to engage members of Congress and their staff on a particular topic or issue.
For genetics and genomics, it is important that members of Congress and their staff understand the value that sustained federal funding holds for genetics and genomics research, and its translation to clinical applications that benefit patients and research institutions nationwide.
On Thursday, September 26, the initial briefing in this series was held, titled, “The Undiagnosed Diseases Network (UDN): The Interface of Research and Clinical Care to Solve Medical Mysteries,” sponsored by Representative Dave Loebsack (D-IA). Gail Jarvik, MD, PhD, ASHG Secretary and Co-Principal Investigator at the University of Washington UDN, moderated the briefing.
In her opening remarks, Dr. Jarvik noted the value of this ASHG-ACMG partnership and the significance of highlighting the UDN, stating, “The expertise of these two organizations and their members spans the facet of genetics from basic research to clinical practice. Just as research informs clinical practice, information learned in the clinic also informs research. Not only is the Undiagnosed Diseases Network an excellent example of this, but it is also a great example of how federal funding for such a program can broadly impact clinical care and research beyond the program itself.”
Additional speakers included Bill Gahl, MD, PhD, Director of the Undiagnosed Diseases Program at NHGRI; John Phillips, III, MD, Co-Principal Investigator at the Vanderbilt University UDN; and Danny Miller, the father of two patients who were diagnosed through the Stanford University UDN.
Dr. Gahl spoke about the history of how his work with the Undiagnosed Diseases Program eventually evolved into the NIH-funded Undiagnosed Diseases Network in 2013. Dr. Phillips went into detail about some of the research and diagnoses he has been able to complete through the UDN, and how the UDN allows for a unique team-based approach in identifying undiagnosed diseases. Danny Miller gave a passionate testament of how the UDN has benefited the lives of his two children, and why continued, increased federal funding is so vital in helping other patients with undiagnosed diseases and their families nationwide.
If you are interested in hearing more about the speakers’ stories, stay tuned! A video of the briefing presentations will be made available in the near future.
Posted by: Alissa Ortman, Associate Director of Digital Programs, ASHG
Several large-scale national studies have been launched to collect phenotypic and genomic data on large populations. These studies will form the basis for future initiatives in precision medicine. ASHG and The American Journal of Human Genetics (AJHG) hosted the webinar Genomic Medicine at the Population Level to describe some of the major approaches being used in these studies around the world, and to highlight the progress in assembling the cohort of one million or more participants in the All of Us Research Program in the United States.
AJHG Deputy Editor Sara Cullinan, PhD, moderated the webinar with speakers Kathryn North, AC, representing the Global Alliance for Genomics and Health (GA4GH); and Stephanie Devaney, PhD, Deputy Director of the All of Us Research Program.
First, Stephanie shared the overall goals of the All of Us Research Program, including serving as a rich, longitudinal resource, focusing on a diversity of program participants, and building tools and capabilities to support broad diversity of researchers using the data. Stephanie noted, “If we harness the right data and information in partnership with a diverse group of one million of us over many years, we will learn things about human health that will be game-changing.”
The focus on partnership is an important part of All of Us, with a goal to work with participants and meet them where they are, to be able to develop a unique program to answer questions that have previously been out of reach for the genetics and genomics community.
Kathryn then spoke about the efforts around integrating genomics data from these types of programs into clinical practice. She noted that millions of samples will need to be collected in order to address some rare and/or complex diseases like cancer. Some of the biggest challenges to this effort are the silo-ing of data by type, disease, country, and institution; and questions about how to approach regulation, consent, and data sharing.
GA4GH is focused on these issues, working to accelerate progress in human health by establishing a common framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data. The alliance currently has more than 700 partners across 90 countries with a goal of having a virtual cohort of more than 60 million samples by 2025. Programs in the alliance include the All of Us Research Program Stephanie discussed, as well as the Australian Genomics Health Alliance, led by Kathryn.
To learn more about the processes and protocols being used by All of Us, GA4GH, or the Australian Genomics Alliance, watch the full webinar recording.
Thank you to our webinar sponsor, Illumina, whose sequencing and array technologies are fueling advancements in life science research, translational and consumer genomics, and molecular diagnostics. For more information, please visit illumina.com or contact their population genomics team at email@example.com.
Posted By: Jil Staszewski, Policy and Advocacy Manager
Starting this week, U.S. elected officials in Washington, DC will go into August recess. While Capitol Hill will grow quieter during the break, this doesn’t mean our advocacy activity should stop. In fact, this recess creates a unique opportunity for you as a constituent to help keep the momentum going right at home.
As you may be aware, ASHG, along with FASEB, the Ad Hoc Group for Medical Research, and the rest of the biomedical research community has been busy advocating for a $41.6 billion budget for the NIH for Fiscal Year (FY) 2020 – a $2.5 billion increase from FY 2019. Last month, the House passed a $41.1 billion budget, and after the August recess, the Senate will begin developing its own legislation.
As your Members of Congress travel back to their home state or district offices for the remainder of the summer, scheduling a face-to-face meeting is a powerful way to establish a connection and advocate for your profession. Your personal story and achievements help your legislator understand the significance of your work in the state or district they represent, and why supporting NIH funding is crucial.
Not sure where to start? Here is a step-by-step guide (PDF version).
Request the meeting.
Find your elected officials and their contact information using the House and Senate.
Email the legislator using the contact form or email address provided. In your email, be sure to confirm that you are a constituent, mention which institution you are from, and briefly describe the purpose of the meeting. Use the below template letter as a guide.
If you do not hear back within a week, you may follow up with the staff, as they receive many requests. Email again, and call the office and speak with the scheduler if necessary.
Dear Senator/Representative ______________:
My name is ____ and I am a geneticist and your constituent. I am writing to request a meeting with you and your staff in your district office to discuss the value of robust funding for the National Institutes of Health (NIH) and its significance for my work. I am available to meet on (date). Please let me know a time that would work best for you.
Thank you so much for your time, and I look forward to meeting with you to discuss this important issue. You may contact me at (email/phone #).
[Your name, institution, address, and contact information]
Once confirmed, prepare for the meeting.
The purpose of the meeting is to educate your Member of Congress about the importance of the field, and the value of federal funding and its impact on your research. Bring a handout to leave with the legislator and read through the material beforehand.
Read up on the legislator you are meeting with. Having a shared personal connection can help develop a rapport and make a lasting impression.
Develop a list of questions the legislator might ask and how you can answer them.
Let ASHG know the date of your meeting and who you are meeting with.
Attend the meeting.
Describe your job using layman’s terms, and connecting it to the legislator’s constituents.
Thank the legislator for their support on past relevant issues.
Explain why the legislator’s support of increased NIH funding would be valuable for your work, and that this year, the research community is asking for $41.6 billion.
Answer any questions the legislator may have and ask how else you can be of assistance.
Take pictures with the legislator and their staff!
Leave behind materials, including your business card, and ask for theirs and their staff’s.
Invite the Member to visit your lab.
Send a follow-up email shortly after the visit, thanking the legislator and staffer for their time.
Let ASHG policy staff know how the meeting went! Send us an email at firstname.lastname@example.org. We may ask you to share your experience to help other ASHG advocates.
We look forward to hearing your stories, and are happy to assist with any questions – just email email@example.com. Thank you for your continued advocacy.
Guest Post By: Mary Woolley, President and CEO, Research!America
Each year, Congress develops a federal budget, which establishes funding for each federal department and agency for the following fiscal year. This determines how much funding agencies like the NIH have to support scientific research through grants, as well as in their own labs.
Budget Caps Threaten Research Funding
A federal law, the 2011 Budget Control Act (BCA), placed stifling caps on spending that have threatened funding for the NIH and other agencies. These caps are blunt tools that batter crucial national priorities, compromising security, prosperity, and progress.
Why It’s Time to #RaisetheCaps
Because the caps established by the BCA are so low, Congress has raised them repeatedly to allow sufficient funding for federal agencies. Unfortunately, those “caps deals” were temporary. Unless Congress acts again, we’re looking at a cut of approximately $55 billion to non-defense discretionary spending in the next fiscal year, which guarantees trouble. If the cuts are distributed evenly or no budget deal is reached, then NIH and every other public health and science agency faces a cut of about 10%. In the case of NIH, that would mean a cut of as much as $4 billion.
Achieving another agreement to raise the budget caps is crucial, time-sensitive, and not by any means a sure thing.
You don’t need a laundry list of the negative consequences on science that these cuts would engender. Suffice it to say that promising research will be choked off, fewer new grants will be funded, and medical and other scientific progress will slow dramatically. All this during a time of unprecedented scientific opportunity, when other nations are already nipping at our heels and would surely attract more and more young scientists if the U.S. signaled lack of support. Starving research is not the solution to what ails us — literally or economically.
Your voices, your story, and your expertise are needed now. Tell your friends, colleagues, and Congressional representatives why medical progress, public health progress, and science itself are crucial, and why federal funding for these priorities is so important.
My first few months as a Genetics Education & Engagement Fellow, which have included rotations at the National Human Genome Research Institute (NHGRI) and ASHG, have been full of lessons, new experiences, and opportunities to increase my skill set.
At NHGRI, I’ve learned more about government agencies and how they work. I’ve begun to develop partnerships across the National Institutes of Health (NIH) and the surrounding community, and have seen that the NIH is a collaborative environment, and how small the genetics community is in the DC area. At ASHG, I have discovered some of the roles of scientific societies and the importance of member relationships. I have seen the behind-the-scenes work required to build a community and plan valuable events. I’ve had the opportunity to participate in and even spearhead events helping to increase genetic understanding and health literacy in different communities.
My major project while at NHGRI was the NBC4 Health and Fitness Expo. This project required immense collaboration and preparation. Though weekend snow covered the streets of the district, we were still able to educate and engage over 200 community members and talk to them about genetic risk assessment, direct-to-consumer genetics, basic genetics and genomics, and some of the things that happen at NHGRI. Seeing the public converse about how genetic health history impacts their lives was a highlight for me. It’s so important to show those who may not have a vested interest in science how it impacts them and affects their day-to-day lives.
This was not my only project that focused on facilitating and increasing genetics education and engagement. Shortly after starting my rotation at ASHG, I was able to help find and develop tools for ASHG members that aid them in answering questions about genetics and genomics from nonscientific communities. ASHG is a trusted source for up-to-date genetics information and my hope is that members of ASHG can locate resources that help them answer and respond to public inquiries.
I have also had the opportunity to speak with budding scientists through an event organized by the Johns Hopkins Center for Talented Youth program. I served as a panelist and talked to gifted high school students about my career and educational experiences in the field. This event allowed me to speak on the importance of genetics, genomics, and health literacy, and to bring awareness to the importance of understanding these topics. It was great to see so many young people excited about science and the influx of different career options available to budding scientists. I’ve also had the opportunity to help increase diversity at NHGRI by helping to find and recruit committee members from diverse populations who have a vested interest in genetics and genomics.
The fellowship is just getting started. I know that there will be even more opportunities to learn, serve, and develop as a scientist and educator.
Posted By: Eve Granatosky, PhD, ASHG/NHGRI Genetics & Public Policy Fellow
Around this time last year, I was putting the finishing touches on my dissertation and trying to coordinate a date for my thesis defense. This week, I helped prepare a United States Senator for an event on drug pricing and met with constituent groups on issues ranging from cancer research to school nutrition. This dramatic and exciting shift was only possible because of the ASHG/NHGRI Genetics & Public Policy Fellowship.
Throughout most of my time in graduate school, I knew that I wanted to pursue a career in science policy, and was looking for an opportunity that would allow me to apply my scientific expertise in rare diseases and preclinical drug discovery in a policy setting. The Genetics & Public Policy Fellowship was a great fit with my background and interest in exploring multiple spaces within the policy world. So far, I’ve had the chance to work in both the executive and legislative branches of the U.S. government, and later this year I’ll complete my fellowship with the Policy and Advocacy team at ASHG. I’m currently about six months into my fellowship, and am happy to report that the experience so far has been just as excellent as I had hoped.
Budgetary and Strategic Planning at NHGRI
I started my fellowship in September within the Policy and Program Analysis Branch (PPAB) at the National Human Genome Research Institute (NHGRI). Right away, I got to jump into several projects the branch was working on, including drafting the Institute’s Fiscal Year 2020 Congressional Budget Justification, an important step in NHGRI’s being funded each year. This was a great way to learn about many of the research projects funded by NHGRI and write about them in a way that was concise, engaging, and accessible. I also helped organize feedback from the wider genomics community that was collected as part of NHGRI’s ongoing strategic planning process.
A highlight of this rotation was presenting a poster at the annual NHGRI Symposium. My PPAB colleagues and I described some recent studies on public perceptions of the use of genetic data by law enforcement (particularly for solving cold cases) and discussed potential policy options to address genetic privacy. After surveying symposium participants on their own views on this topic, we learned that while the NHGRI community was mostly supportive of the use of genetic data for law enforcement for solving crimes, they overall reported having more concerns about their genetic privacy than do members of the general public who have been surveyed.
A Wide Range of Health and Education Topics on the Hill
This January, I started my second fellowship rotation, in the office of Senator Richard Blumenthal from my home state of Connecticut. I work with two other staffers on the health and education portfolios, including issues related to biomedical research. Within the health space, I’ve worked on a wide range of issues, including antibiotic stewardship, e-cigarettes, prescription drugs, and dietary supplements. In education, I’m working on issues related to social and emotional learning and oversight of predatory colleges and universities.
So far, I’ve been involved in both long-term projects in these areas as well as the day-to-day business of the office. I really enjoy getting to meet with Connecticut constituents to discuss their priorities and concerns – I feel like I learn something new every meeting and it’s fascinating to get to hear about so many different topics.
Another major part of my job as a fellow is drafting bills, letters, memos, and briefings for the Senator to help him prepare for events. Putting together memos and briefings is probably where my research and analysis skills from graduate school are most valuable. These documents need to succinctly synthesize what a particular event is about, what stakeholders are involved and what their perspectives are, what past legislative or oversight work the Senator has done in that issue area, and what message he should try to get across in his remarks. Overall, I really like the pace of my office and the scope of issues I work on, and I’m looking forward to what the next few months will bring!
Applying My Scientific Training in a Policy Environment
As I look back on the past six months, I realize how valuable this fellowship has been for my career and professional development. I’ve solidified my interest in pursuing a path in science policy, and thought more specifically about what kind of professional positions I might like to pursue in the future. I’m constantly refining my communication skills, particularly in writing for different audiences and purposes. I’m improving my project and time management skills, and learning to how to prioritize short- and long-term goals. Maybe most importantly, I really like what I’m doing! This fellowship has shown me first hand that I can apply my scientific training outside of a research environment in a way that’s both personally and professionally fulfilling.
I would definitely recommend this fellowship to any early career genetics professionals who are interested in careers in policy. Beyond getting to do the kind of awesome work I talked about here, you’ll benefit from mentorship and support from the whole community of fellowship alumni. Thank you to ASHG and NHGRI for making this experience possible, and I can’t wait to see what the rest of my fellowship brings!