U.S. Congress Approves $2 Billion Increase for NIH Funding

Posted by: Nikki Meadows, PhD, ASHG/NHGRI Genetics & Public Policy Fellow

Last month, the U.S. Congress approved legislation establishing a $2 billion (or 5.1%) funding increase for the National Institutes of Health (NIH) in Fiscal Year (FY) 2019. NIH’s total funding for FY 2019 is $39.1 billion. This includes increased funding for several priority research initiatives, such as the Cancer Moonshot and the All of Us research Initiative.

Increase Will Support New Priorities in Genetics and Genomics

The legislation (H.R. 6157) was signed into law by President Trump on September 28, after passing both the Senate (93-7) and the House (361-61). The $2 billion boost is the fourth consecutive increase in the NIH budget in recent years, demonstrating strong bipartisan support for biomedical research in Congress. Significantly, it is the first time in over 20 years that Congress has finalized the NIH budget on time.

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The $2 billion increase is consistent with the increase recommended and advocated for by ASHG and other FASEB organizations. (Credit: NIH Research Funding Trends, FASEB)

In addition to Congress being able to allocate funding for specific research initiatives, the annual appropriations bill also gives Congress an opportunity to issue directives to federal agencies, such as establishing how an agency should proceed on a particular activity or commissioning a report about a particular topic. One such directive you may be familiar with is the so-called “Dickey-Wicker Amendment,” which forbids the use of federal research dollars on any research that harms human embryos. In the FY 2019 appropriations, there are three directives related to genetics and genomics:

  • Representatives Marcy Kaptur (D-OH) and Katherine Clark (D-MA) advanced an amendment protecting the genetic privacy of individuals seeking family reunification. The amendment directs the Office of Refugee Resettlement to ensure the protection and privacy of genetic material, data, or information of children, parents, and all of the individuals being tested and their relatives.
  • A Government Accountability Office report was commissioned to analyze the medical genetics workforce nationwide. The report is asked to determine whether there are a sufficient number of qualified professionals to serve this growing health need and whether there are any geographic areas that lack access to genetic counseling professionals.
  • An amendment from Senator Marco Rubio (R-FL) requires the HHS Secretary to submit a report on the circumstances in which the Centers for Medicare and Medicaid Services may be providing payments to, or otherwise funding, entities that process genome or exome data in the People’s Republic of China or the Russian Federation.

Funding Bill’s Timely Passage Will Help with Long-Term Planning

The fiscal year runs from October 1 through September 30 of the following year, and each year, Congress is required to establish funding for upcoming fiscal year. For the past 21 years, Congress has missed the deadline, and in order to avoid a government shutdown, had to pass a Continuing Resolution (CR) that agreed to continue to fund the government until a new spending bill was completed. Indeed, such a scenario caused brief shutdowns last winter.

This year, the Department of Health and Human Services, which includes NIH, was funded through all of FY 2019, so there is no possibility of a shutdown for NIH. The budget’s timely passage means that institutes and centers can plan for the year ahead knowing what funds are available. However, other agencies, including the National Science Foundation, are currently funded by a CR until December 7, 2018, and funding for these agencies in FY 2019 remains uncertain.

Talking Genetics and Genomics on Capitol Hill

Posted By: Nikki Meadows, PhD, ASHG/NHGRI Genetics & Public Policy Fellow

What happens when you put three genetics experts in a room full of curious minds? Ideally, a fascinating conversation that everyone involved will still be talking about days later, and that’s exactly what happened in a U.S. Senate hearing room last Friday, September 28. The health staff of Senator Patty Murray, top Democrat on the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP Committee), invited ASHG, along with the National Human Genome Research Institute (NHGRI) and the HudsonAlpha Institute for Biotechnology, to discuss genomics with Congressional staff working on health issues.

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L-R: Genetics experts Eric Green, Neil Lamb, Nikki Meadows, and Kiran Musunuru discussed the importance and uses of genetics and genomics research with U.S. Congressional staff. 

With genomic technologies becoming more prevalent in medicine and agriculture, it is critical that those making legislative policies impacting genetics and genomics have a good understanding of genomics research and its uses. NHGRI was represented by its Director, Eric Green, MD, PhD; HudsonAlpha invited their Vice President for Educational Outreach, Neil Lamb, PhD; and ASHG’s spokesperson was Kiran Musunuru, MD, PhD, MPH, an Associate Professor of Medicine at the University of Pennsylvania and our 2019 Program Committee Chair.

Dr. Green opened the conversation by discussing how technology advancements in the last two decades have revolutionized the field of genomics. He described how our ability to now sequence an individual’s entire genome quickly and cheaply has completely transformed how we think about genomics, the types of information we can glean from our genomes, and how we can apply this knowledge to realize the vision of personalized medicine. Dr. Musunuru explained how scientists are able to use genomics to increase our understanding of common diseases such as cardiovascular disease, and to explore possible avenues of treatment.  He also explained why diversity in research cohorts is so important. Dr. Lamb finished up the introduction to genomics by talking about using genomic sequencing to study rare and undiagnosed diseases; he also touched on how using genomics in agriculture may have an impact on the plants and animals that we eat in the future.

A fascinating dialogue ensued between the expert panel and the Congressional staff regarding what personalized medicine will look like in the future, how genomic technologies are going to fit into existing healthcare framework, and the importance of genomic literacy at all levels.

Through participation in events like these on the Hill, ASHG is helping Congress understand the value of genetics research. It also helps us showcase the expertise of our members, and demonstrates that ASHG is a resource to which Congress can turn for expertise on human genetics and associated policy issues. In this way, we are able to build stronger relationships with members of Congress and their staff.

Nikki Meadows, PhD, is the 2017-18 ASHG/NHGRI Genetics & Public Policy Fellow. For more information on ASHG’s policy and advocacy programs, please visit the Policy & Advocacy webpage.

Welcome Genetics & Public Policy Fellow: Eve Granatosky

Posted by: Staff

We’re excited to welcome Eve Granatosky, PhD, to the ASHG family!

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Eve Granatosky, PhD, ASHG/NHGRI Genetics & Public Policy Fellow  (courtesy Dr. Granatosky)

Dr. Granatosky started the ASHG/NHGRI Genetics & Public Policy Fellowship in August, and we were able to sit down to discuss how she got into science policy and what most excites her about her new position. ASHG and the National Human Genome Research Institute (NHGRI) co-sponsor the Genetics and Public Policy Fellowship to give genetics professionals an opportunity to contribute to the policy-making process.

ASHG: Why did you apply for the ASHG/NHGRI Genetics & Public Policy Fellowship?

Eve: The ASHG/NHGRI Genetics & Public Policy Fellowship is one of the few fellowships that has a rotational structure, allowing me to sample a few different areas in science policy. I’m not sure exactly what type of policy I want to get into, or which stakeholders I want to work with, so this position will allow me to figure that out. I recommend it to anyone who’s interested in science policy, but uncertain about what their first steps into the field should be.

ASHG: How did your background lead you to science policy

Eve: I started my career at Stonehill College, with a BS in biochemistry, and received my PhD from the University of Notre Dame. While my research focused on the biosynthesis and therapeutic potential of complex molecules derived from soil bacteria, I also developed my love for science policy.

I went into graduate school not really knowing what I wanted to do, but while there, I got to hear a guest lecturer who was a biochemist by training but currently worked for the government on bioterrorism issues abroad. She was using her scientific degree outside of the lab and the purely medical realm. This was the first time I thought that I could do something different with my degree.

I also participated in a Capitol Hill Day, where I had the opportunity to advocate for scientific research to politicians. There, I met graduate students from other universities who were also interested in science policy. Their schools had groups on campus that allowed them to participate in science policy activities year-round, which led me to co-founding the Science Policy Initiative at Notre Dame (SPI@ND).

SPI@ND meets monthly to discuss policy issues, but also collaborates with other science policy groups, such as the National Science Policy Network, and runs outreach events on campus and in the community. Though SPI@ND now runs without me, I am proud to say that it is still a strong organization.

ASHG: Why science policy?  

Eve: While at Notre Dame, I was working in a lab that focused on a rare neurodegenerative condition that largely affected children. In this position, I mostly interacted with researchers, but also got to meet some of the patients and their families. It was really inspiring to see the people who our research directly affected. Science policy is an avenue for me to continue to have that direct impact. It creates paths that get the research to the people who need it.

In addition, during my lab work, it occurred to me that there were striking differences in perspectives when it came to how scientists and nonscientists viewed some issues, such as the use of genetically modified organisms. I want to assist in addressing these differences and produce work that will help all stakeholders benefit from the research being done.

ASHG: What policy issues interest you?

Eve: Making diagnostic and therapeutic tools for rare diseases more accessible to patients is a need in the field. We also have to make sure that the regulatory environment is favorable towards these developments, and that patients can more easily participate in clinical trials for new interventions.

Collaboration is a major part of these efforts. Without collaboration between organizations, both private and public, research ceases to advance and useful clinical trials won’t exist.

ASHG: Where do you think genetics is heading?

Eve: I’m really excited to see that the general public is becoming more interested in genetics because of services like direct-to-consumer genetic testing. I obviously love genetics and science, so this is a great time for us! I believe genetic testing will continue to become more accessible and useful, especially when it comes to developing precision medicine.

ASHG: Any final words for fellow scientists interested in science policy?

Eve: Twitter is a fantastic source to learn about science policy. The hashtags #scipol and #SciPolJobs are very active, and useful when it comes to finding opportunities to get involved. Science policy advocates are also engaged on Twitter and will live-tweet hearings or give their opinions on bills. Definitely check out those feeds to get a sense for what you might be interested in and what the field is looking for.

Background on the ASHG/NHGRI Genetics & Public Policy Fellowship:

The ASHG/NHGRI Genetics & Public Policy Fellowship is designed as a bridge for genetics professionals wishing to transition to a policy career. This unique fellowship provides three separate types of experiences: time spent in the National Institutes of Health within the Executive Branch; a staff position on Capitol Hill serving elected officials in the Legislative Branch; and experience working with ASHG in the non-profit science advocacy sector. Applications open annually in February.

ASHG Affirms Essential Role of International Travel, Global Participation for Scientific Advancement

Posted By: David L. Nelson, 2018 President

In light of the United States Supreme Court’s decision to uphold the White House’s 2017 Executive Order limiting travel for citizens of select nations, I want to affirm, on behalf of the membership of our Society, that we remain committed to the knowledge that research in the U.S. benefits greatly from the presence and full participation of international researchers in laboratories around the country and world.

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ASHG noted in our March 2017 statement opposing the ban that nearly one-third of  members reside outside the U.S., and that cross-pollination of ideas across borders is essential for sparking new avenues of inquiry and establishing partnerships. The diversity of experience, perspective, and expertise that comes from a globally connected research community moves science forward, and that benefits all of us. As 2017 ASHG president Nancy Cox noted so eloquently at the time, as geneticists, “we are all students of human variation and we value – indeed, celebrate – the diversity that has contributed to our survival as a species.”

We affirm our commitment to serve and support the international human genetics community and continue to welcome participation of scientists from all nations in the Society’s work and events.

David L. Nelson, PhD, is 2018 President of ASHG. He is a Cullen Foundation Professor of Molecular and Human Genetics at the Baylor College of Medicine, Associate Director of the BCM Intellectual and Developmental Disabilities Research Center, and Director of the BCM Integrative Molecular and Biomedical Sciences Graduate Program.

Happy 10th Birthday, GINA!

Posted By: Derek Scholes, ASHG Senior Director of Policy & Advocacy

Ten years ago today, President George W. Bush signed into U.S. law the Genetic Information Nondiscrimination Act, better known as GINA. The enactment of GINA in 2008 was the culmination of a determined 13-year campaign by congressional champions and advocacy groups, including ASHG, to establish nationwide legal protections against genetic discrimination in the workplace or through one’s health insurance. Today, in recognition of the anniversary and the enduring importance of the law, ASHG is launching a short video to help spread the word about the law.

 

One reason why ASHG has always been a strong supporter of GINA is because it helps reassure the public that they can volunteer for genetics research, or take a genetic test at the doctor’s, without worrying that this will affect their job, their health insurance, or their privacy. It was for this reason that leaders of the Human Genome Project were calling for the establishment of protections against genetic discrimination in the mid-1990s. At the time of its passage, Jo Boughman, PhD, ASHG’s then-Executive Vice President, wrote, “Americans can feel more confident that their personal genetic information cannot be used against them, and encouraged to participate in scientific research studies that require the collection and storage of genetic data.”

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Former President George W. Bush signs the Genetic Information Nondiscrimination Act on May 21, 2008, in the Oval Office.

But GINA is only effective in reassuring the public to the extent that people know about the law. Since its passage in 2008, however, studies have repeatedly shown that most individuals are not aware of GINA or its protections. A 2011 study found that only 16% of Americans knew of any law protecting their genetic privacy. Similarly, a 2015 survey of U.S. residents found that 79% were unfamiliar with GINA. This lack of awareness is found within health care too, with research finding most physicians and nurse practitioners do not know about the law. Together, these studies suggest an ongoing need to raise awareness about GINA if it is to be effective as originally envisioned.

ASHG is playing its part. As well as watching the video, please check out ASHG’s statement about the 10th anniversary; today’s Research!America blog post by ASHG President David Nelson; and a blog post from former ASHG/NHGRI Genetics and & Public Policy Fellow Daryl Pritchard, reflecting on his time working in Congress on GINA.

GINA is designed to prohibit genetic discrimination within health insurance. Since GINA’s passage, there has been ongoing discussion in the genetics community regarding whether there should be similar legal protections in the U.S. against genetic discrimination for ‘the other insurances’ – life, disability and long-term care, protections that go beyond the current patchwork of state laws. Two issues commonly discussed are (a) whether there is a strong, evidence-based case for establishing such protections and, if so, (b) how one would craft such a federal law, or series of state laws, to establish such protections. Let us know your thoughts below, or write to us at policy@ashg.org.

For more information on ASHG programs in policy and advocacy, visit the Policy & Advocacy page.

GINA Turns 10: A Look Back at its Passage

Posted By: Jillian Galloway, Science Policy Analyst, ASHG

As the Genetic Information Nondiscrimination Act (GINA) turns ten, ASHG caught up with Daryl Pritchard, former ASHG/NHGRI Genetics and Public Policy Fellow, to discuss his time in Rep. Louise Slaughter’s office working on the passage of GINA and her legacy as the woman who championed genetic information protections in Congress.

ASHG: Trained as a geneticist, how were you able to work in Rep. Slaughter’s office?

Daryl: The opportunity came through the ASHG/NHGRI Genetics & Public Policy fellowship. The fellowship really opened doors for me. It was how I got to see all of the passion Rep. Slaughter had for genetics and science.

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Congresswoman Louise Slaughter and Daryl Pritchard, 2003 (courtesy Dr. Pritchard)

ASHG: What was your role in Rep. Slaughter’s office?

Daryl: I was the first fellow and needed to find an assignment on Capitol Hill, and was drawn to Slaughter’s office because of the GINA legislation. GINA was a personal priority for me and something Congresswoman Slaughter was deeply passionate about. I took on the role of Health Legislative Assistant that year. As a geneticist, I could contribute to public understanding of the bill, translating the law’s benefits into layman’s terms. Beyond GINA, I would handle any scientific or health policy issue. GINA was the primary reason I was there, but other important health issues were also on the docket.

ASHG: What was your involvement with GINA while working in Rep. Slaughter’s office?

Daryl: It was pretty intense. The bill had first been introduced in 1995 and I was there in 2003. She needed to gain her colleagues’ support for the legislation and educate other members of staff and the public about its importance. So I drafted talking points for public communications and ‘Dear Colleague’ letters to drum up support from her fellow members of Congress. I would represent Louise at various visits and would promote her vision of protections for the American public against genetic discrimination.

ASHG: Why do you think the passage of GINA was so important to her? 

Daryl: She often talked about being the only microbiologist in Congress and being a scientist early in her career. She recognized the importance of scientific research for health and realized that without adequate protections for patients and research subjects, there would be a lingering fear or reluctance on the part of the public to get testing. This, in turn, would stifle the advance of health discovery and the incorporation of genetic information into care.

She had a second motivation as a patient. A clear influence was the death of her sister from pneumonia despite being in doctors’ care. Louise knew genetics was key to improving health, but that if genetic information were used by employers or health insurers, there was a possibility for that information to qualify or disqualify one from coverage or benefits, hiring or firing.

ASHG: What can you tell us about Slaughter’s reaction to the passage of GINA?

Daryl: Louise was really pleased. A lot of hard work, dedication, and time had gone into its passage. To finally get GINA approved as a bicameral and bipartisan piece of legislation reflected her tireless efforts to advance the bill. Referred to as the first civil rights legislation of the new century, it was so necessary for the American public. She believed it was a no-brainer that it should be passed. She congratulated then-President Bush and her colleagues for bringing it to fruition.

ASHG: Ten years after its passage, how can the genetics community help ensure that GINA is implemented as intended?

Daryl: GINA is a great victory for patients and scientists, and you can expect that employers and insurers will continue to challenge it. The genetics community should look at challenges as they arrive and defend the law for its original intent. A key thing to keep in mind is that GINA prohibits even the collection of information by health insurers and employers. Lingering fears about genetic discrimination do not come from a fear of employers’ or insurers’ good intentions, but rather from a concern that genetic data could be exploited or misused. The genetics community should continue to oppose collection of genetic information by employers and health insurers.

ASHG: How is the passage of GINA an example of the impact that the ASHG/NHGRI fellowship has on advocacy?

Daryl: The fellowship promotes the advancement of research and the importance of genetics and genomics. Its impact is far-reaching, and GINA is just one example. Many bills before Congress have a need for genetics and genomics expertise. It is essential that the science is accurately represented in those conversations.

The ASHG/NHGRI fellowship brings the voice of genetics and genomics to legislation and needs to continue to do that by having a presence in different congressional offices. We need to be there. I appreciate the opportunity to have been the first fellow. The experience has been influential in advancing my career.

Daryl Pritchard, PhD, is Senior Vice President of Science Policy at the Personalized Medicine Coalition. He worked in Rep. Slaughter’s office in 2003 through the ASHG/NHGRI Genetics & Public Policy Fellowship.

ASHG and FASEB: Working Together to Make a Difference in Advocacy & Policy!

Posted By: Jennifer Zeitzer, FASEB Director of Legislative Relations

The Federation of American Societies for Experimental Biology (FASEB) is the nation’s largest coalition of biomedical researchers, representing 30 scientific societies and more than 130,000 researchers from around the world. As a member of FASEB, ASHG works closely with FASEB and the other member societies to advance research and education in biological and biomedical sciences and advocate for increased funding for biomedical research. Through FASEB, ASHG also monitors and regularly speaks out on science policy issues impacting the scientific community.

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Jennifer Zeitzer, FASEB Director of Legislative Relations

For example, ASHG recently joined FASEB in celebrating the historic $3 billion dollar increase for the National Institutes of Health (NIH) approved by Congress in late March. Securing the increase was a collaborative effort between many organizations. ASHG urged its members to email and call their elected officials and sent two Board members to FASEB’s Capitol Hill Day to make the case for NIH funding with their members of Congress.

This month, Congress began consideration of the fiscal year (FY) 2019 budget, and ASHG and FASEB are again working together to advocate for increased NIH funding. There is a good chance NIH will receive another significant funding increase in FY 2019, thanks to legislation passed in February to raise strict spending caps that were enacted in 2011. The appropriations committees will determine how that additional funding is divided among federal agencies.

Making sure NIH gets another increase will require additional coordinated advocacy between ASHG and FASEB over the next few months. More information is forthcoming, but ASHG members should expect to receive e-alerts from FASEB as well as reminders to check out the resources and tools in the ASHG Advocacy Center.

ASHG members also have access to FASEB’s Advocacy Toolbox, which includes instructions for requesting a meeting with a member of Congress at home and tips for communicating with elected officials through social media. The Washington Update newsletter provides the latest news on science policy and advocacy inside the Beltway and from federal agencies (click here to subscribe).

Communicating about science is another area where ASHG partners with FASEB. The Human Microbiome and Individualized Medicine: Genetically Fine-Tuning Prevention, Diagnosis, and Treatment of Disease are articles in FASEB’s Breakthroughs in Bioscience series that illustrate genetics-related developments in biomedical research and their importance to society. Similarly, the Horizons in Bioscience one-pagers, including articles on liquid biopsies, CRISPR/Cas gene editing, epigenetics, and optogenetics, summarize scientific discoveries on the brink of clinical application and supplement the longer Breakthroughs.

The recent $3 billion increase for NIH and other advocacy successes would not have been possible without the joint effort between FASEB and its member societies. As Congress makes decisions about the 2019 budget, FASEB is proud to have a strong partnership with ASHG to ensure that the voices of scientists are heard on Capitol Hill and in congressional districts across the country.

Jennifer Zeitzer has been the Director of Legislative Relations at FASEB since 2008. She coordinates advocacy efforts with FASEB member societies and others in the biomedical research community, including organizing FASEB’s annual Capitol Hill Day.

FASEB offers free webinars on advocacy and policy issues. Sign up to receive notifications about future FASEB webinars here.