Pivoting Your Career Toward Science Policy and Advocacy

By: Staff

ASHG and the National Human Genome Research Institute (NHGRI) co-sponsor the Genetics & Public Policy Fellowship to give genetics professionals an opportunity to contribute to the policymaking process. If you’re interested in the development and implementation of genetics-related health and research policies at a national level, then this Fellowship may be right for you. Applications are open now through April 19, 2019.

Questions about what the position is like? Read on for real-world details from past Fellows about their experiences.

How is the position structured?

The Fellowship lasts for 16 months, during which time the Fellow rotates through three positions within the Policy and Program Analysis Branch of NHGRI, a congressional office of a member of Congress or a committee, and the Policy & Advocacy Department at ASHG. This allows Fellows to gain experience in different roles of national policymaking and decide which aspects of policy and work settings they are interested in pursuing as a career.

2016-17 Fellow Christa Wagner said, “The ASHG/NHGRI Fellowship has provided me with a diverse array of experiences, both in terms of topics covered and settings in which I worked on policy. The Fellowship provides an exceptional experience for those with a background in genetics to play a role in effective policymaking.”

Cari Young, 2015-16 Genetics & Public Policy Fellow, walks us through her experiences.

What kind of work will I do? 

While it depends on the needs of each organization at the time of arrival, 2017-18 Fellow Nikki Meadows gave us a look into her work during two of her rotations through several blog posts.

Nikki Meadows 2017-18 Policy Fellow
2017-18 Fellow Nikki Meadows discusses advocacy with members.

During her rotation with the Senate HELP Committee, Nikki organized a panel of genetics experts to answer questions from congressional staff working on health issues. This allowed her the opportunity to network with seasoned geneticists and help enhance the scientific knowledge of congressional staff. At ASHG, Nikki also provided updates to members on important policy issues such as the federal biomedical research budget  and genetic privacy. She additionally promoted the ASHG Advocacy Center and encouraged scientists to make use of these vital tools, both at the 2018 Annual Meeting and through online forums.

While these certainly weren’t all of Nikki’s duties, she explored several areas of work with a variety of audiences. Nikki said, “I had some amazing opportunities during the course of this Fellowship. I’ve gained so much from this program, both personally and professionally, that I am forever changed by it.”

Will this position help further my career? 

The rotational aspect of the position is a huge bonus to many applicants. 2015-16 Fellow Cari Young said, “This Fellowship provided a unique opportunity to take on varied roles within the science and health policy landscape, allowing me to experience the pros and cons of working in each setting and helping me to crystallize my thinking on where I might want to go next. It also made me a more marketable applicant for policy positions beyond the Fellowship.” As Fellows gain experience in different areas of public policy in just 16 months, it is a vital starting point that lays a solid base.

Being a Fellow additionally opens a new professional network to benefit from. 2012-13 Fellow Laura Koontz said, “Not only has the experience been invaluable, the network of Fellows I’ve joined as an alumna are among the best policy professionals in D.C. The Fellowship has also allowed me to fully realize my commitment to bettering the lives and treatment of people with cancer – the reason I got into scientific research in the first place!”

What kind of jobs might I get afterwards?

Check out our policy fellowship page to see where all our past Fellows are working now! Our Fellows have gone on to positions at the National Institutes of Health, the U.S. Food and Drug Administration, the White House, and a number of other organizations focused on science and health.

Applications are open now through April 19, 2019. Apply today!

Voice Your Concerns about the U.S. Government Shutdown’s Impact on Science

Posted By: Staff

The American Society of Human Genetics (ASHG) deeply believes that ongoing federal government support is essential for the scientific enterprise in the United States. We affirm the important role of normal operations to keep scientific progress moving forward.

20190124_capitolAlthough – fortunately – the National Institutes of Health (NIH) is operational during the partial U.S. government shutdown, other science-based agencies that support and facilitate ASHG members’ work and that of their colleagues are not. Notably, the National Science Foundation (NSF) is affected.

ASHG is proud to stand with the Federation of American Societies for Experimental Biology (FASEB) in letting Congress know how the shutdown is affecting science. Please use FASEB’s Legislative Action Center to contact your members of Congress about how the shutdown is impeding progress and reaffirm the importance of science agencies in advancing research.

 

H.R. 7083: Improving Access to Genetic Counseling

Posted By: David L. Nelson, 2018 President

Genetic counseling is an integral part of advancing human genetics in medical care and vital to our collective research agenda. Recognizing this, ASHG took action last week in strong support of H.R. 7083, the Access to Genetic Counselor Services Act of 2018, which would expand access to genetic counseling services for Medicare beneficiaries. We took this action under the leadership of the National Society of Genetic Counselors (NSGC), and are proud to add our largest voice in the human genetics community to urge this policy change. NSGC is our valued partner on this legislation and other new programming to serve genetic counselors in research.

Specifically, I wrote to bill sponsors Representatives Erik Paulsen (R-MN) and David Loebsack (D-IA) expressing the Society’s gratitude for introducing this legislation and for seeking to resolve a problem that has existed for many years (see image). Currently, while genetic counseling is covered under Medicare, genetic counselors themselves are not currently recognized as providers by the Centers for Medicare and Medicaid Services, the federal agency that runs the program. This means that genetic counselors are unable to bill directly for any services rendered to Medicare beneficiaries.

The letter written by David Nelson, PhD, ASHG President, to U.S. Representatives Erik Paulsen (R-MN) and David Loebsack (D-IA).
The letter written by David Nelson, PhD, ASHG President, to U.S. Representatives Erik Paulsen (R-MN) and David Loebsack (D-IA).

H.R. 7083 is designed to resolve this coverage gap. If it were to become law, this bill would recognize licensed genetic counselors as Medicare healthcare providers, and further establish a path for Medicare reimbursement for other genetic counselors.  In this way, it will reduce the access issues to genetic counseling services currently faced by Medicare beneficiaries.

For this bill to become law, it will need to be passed by Congress in the next few days.  Given the many steps in the legislative process, this is highly unlikely.  However, we hope that the legislation is re-introduced when the Congress reconvenes next year and that Congress advances it swiftly through the legislative process.

To receive updates regarding progress of this bill and on other issues, I urge you to sign up as an ASHG Advocate if you have not already done so.

David L. Nelson, PhD, is the 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.

Legislation Funding NIH Also Protects Genetic Privacy of Vulnerable Families

Posted By: Nikki Meadows, PhD, 2017-18 ASHG/NHGRI Genetics & Public Policy Fellow 

Buried within the legislation establishing funding for the National Institutes of Health for Fiscal Year (FY) 2019 (H.R. 6157) is a little-reported provision to protect the genetic privacy of immigrant family members. Congress often uses the annual appropriations bills to direct federal agencies on how to proceed on a particular activity or to commission a report about a particular topic. This provision, proposed by Representatives Marcy Kaptur (D, OH-09) and Katherine Clark (D, MA-05), is one such directive.

The U.S. Capitol Building
The U.S. Congress gave some attention to genetic privacy through the annual budget. (courtesy the Architect of the Capitol)

In April, the Department of Homeland Security (DHS) began enforcing an existing family separation policy with the stated goal of stemming what DHS and other related agencies perceived to be a rise in illegal immigration at the U.S.—Mexico border. As was widely reported in the media, children were separated from their parents or legal guardians at the border and placed in the custody of the Department of Health and Human Services’ (HHS’s) Office of Refugee Resettlement (ORR), while the parents and legal guardians were held in criminal detention. In response, many members of Congress and the general public demanded reunification of these families, and in June a federal judge ordered that the more than 2,500 children in ORR custody be reunited with their families.

Family Reunification Involved Genetic Testing 

To help reunite young children with their families by the July 5 deadline, HHS began using DNA testing to verify parentage. However, HHS provided few details regarding the testing, such as who was being tested, which labs were involved in performing the tests, and what testing was being performed. Importantly, there was also a lack of clarity regarding whether individuals were consenting to such testing, how HHS was protecting individuals’ genetic privacy, and how the test results could be used.

The provision added by Reps. Kaptur and Clark was designed to address some of these concerns. It directs ORR to “ensure the protection of privacy and genetic material, data, or information of children, parents, and of all individuals being tested and their relatives.” It also requires consent prior to collection and sample destruction once testing has concluded.

ASHG Applauds Kaptur and Clark for their Attention to Genetic Privacy 

ASHG was very supportive of this provision, and President David L. Nelson sent letters to Reps. Kaptur and Clark thanking them for their “leadership in advancing measures to ensure individuals’ genetic privacy as immigrant families seek to be reunified.” He wrote that “…an individual’s genome includes information on his or her risk for disease, their ancestry, and their relatedness to others, [so] it is important that we protect the genetic privacy of people tested.” He went on to further say that “genetic analysis should be restricted to the explicit purpose for which a person is being tested.”

ASHG’s support for this provision is the latest way in which the Society is championing measures to protect individuals’ genetic privacy. ASHG is a strong supporter of the Genetic Information Nondiscrimination Act (GINA), which among its provisions protects genetic privacy related to employment and health insurance, as well as a similar law in Canada. It also supports provisions in the 21st Century Cures Act strengthening participant privacy in research. The Kaptur/Clark amendment extends some privacy protections to those seeking reunification and ensures that federal agencies cannot use their genetic information for any purpose beyond reunification.

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. 

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.

How Companies Can Safeguard Consumer Genetic Data

Guest Post By: Carson Martinez, Future of Privacy Forum

Consumers’ interest in accessing their genetic information has boomed, as companies bring increasingly affordable consumer genetic and personal genomic testing services to market. With more testing services available than ever before, it is estimated that more than 12 million consumers have signed up in recent years to explore the insights that can be drawn from their genes.

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Carson Martinez, Future of Privacy Forum (courtesy Ms. Martinez).

With many of these genetic testing services, individuals can share their genetic data with academic researchers or pharmaceutical researchers, and after reviewing an informed consent notice on potential risks, many choose to participate. By providing the research community the ability to analyze significantly larger and more diverse range of genetic data, individuals have helped researchers discover important breakthroughs in biomedical research, healthcare, and personalized medicine.

If consumers are to safely share this information, the sensitive details revealed by genetic data need to be safeguarded by companies. Genetic data is one of the most intimate types of information, as it may be used to identify predispositions and potential risk for future medical conditions, and may reveal information about and even implicate an individual’s family members, including future generations. And as we have seen in recent cases like the Golden State Killer, it also can be used as a powerful investigative tool by law enforcement.

Although laws such as the Genetic Information Nondiscrimination Act of 2008 protect against discriminatory uses of genetic data by employers and health insurers, consumers also need to be certain that companies will respect the privacy of their genetic data and give them strong controls over how it is used and shared.

With this in mind, I and other speakers will be discussing the privacy of personal genetic information at the ASHG 2018 Policy Luncheon, taking place Thursday, October 18.

As a think tank focused on helping chief privacy officers navigate privacy challenges and incorporate ethical data practices, the Future of Privacy Forum (FPF) believes that emerging technologies like consumer genetic tests are valuable, but that protecting individual privacy is core to the success of any industry. In this nascent industry, there is a need for strong guidelines.

To that end, FPF together with 23andMe, Ancestry, Helix and other leading consumer genetic testing companies released Privacy Best Practices for Consumer Genetic Testing Services this summer to develop a policy framework for the collection, use, and sharing of consumer genetic data.

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Privacy best practices for consumer genetic testing services (Courtesy Ms. Martinez).

Incorporating input from a wide range of stakeholders including the Federal Trade Commission, genetics experts, and privacy and consumer advocates, the document:

  • sets forward consumer rights to access and delete their genetic data;
  • requires informed consent for sharing genetic data for research;
  • bans the sharing of genetic data with third parties (such as employers, insurance companies, and educational institutions) without express consent;
  • requires valid legal process for disclosing genetic data to law enforcement; and
  • requires notice and consent for material changes to the policy and transfer of ownership, among others.

The Best Practices is supported by: Ancestry, 23andMe, Helix, MyHeritage, Habit, African Ancestry, FamilyTreeDNA, and Living DNA.

Carson Martinez is a Health Policy Fellow at the Future of Privacy Forum and leads FPF’s Health Privacy Project. To learn more about the Best Practices, attend the Policy Luncheon at the ASHG 2018 Annual Meeting in San Diego.