A candid and kind genomics pioneer leaves a deep impact on NHGRI and the genomics community.
Debbie Nickerson (1954-2021) was a long-time grantee and advisor of the National Human Genome Research Institute (NHGRI) and a major positive force within the genomics community. Her influence on the lives of people and programs at the Institute and the field of genomics is immeasurable.
Nickerson was a visionary genomics researcher at the University of Washington, which, like many other institutions funded by NHGRI, has a legacy of fostering visionary genomics researchers. But she stood out with her passion, frankness, sense of humor, and commitment to a more diverse genomics workforce. From early on, she made path-breaking scientific contributions at the intersection of genome technology development, studies of human genomic variation, and bioinformatics, while recognizing the critical role that diversity plays in ensuring that genomics is revolutionary and clinically relevant for all. She was also one of few women leaders in genomics at the beginning of the field, making her contributions even more notable.
Debbie played a significant role in major landmark projects, including the Human Genome Project, the International Haplotype Map (HapMap) Project, Electronic Medical Records and Genomics Network (eMERGE), the Genomics Research to Elucidate the Genetics of Rare diseases (GREGoR) program.
When NHGRI staff learned of her death on Dec. 24, 2021, there was an outpouring of remembrances and heartfelt tributes to her. The NHGRI History of Genomics Program delved into the Institute’s archives for examples of her influence on NHGRI programs and projects. Nickerson’s name appears frequently among these documents. NHGRI Historian Chris Donohue noted the following about Debbie’s archival footprint: “We have at least 1,000 documents that in some way illustrate her influence, capture her voice and detail her expertise across multiple domains of genome science and technology.”
Below are some of those memories and materials as a tribute to her legacy.
When the Human Genome Project began in the early 1990s, Debbie was one of the first women leaders of the emerging field of genomics. She has been connected to the Institute ever since then.
“I have known Debbie since the early days of the Human Genome Project. She was a forceful champion of so many things cherished by NHGRI and NIH, including significant attentiveness to training and diversity. She was also an amazing and dedicated researcher, always ready to tackle the next great challenge in genomics. I would never describe Debbie as ‘shy’ — for example, she always felt comfortable telling me what I was doing well as NHGRI Director and what I was doing not so well! I actually admired her bluntness because she had earned my respect and admiration. The origin of her advice was always from her heart and never self-serving. I will miss her very much.”
Eric Green, NHGRI Director
See an archival document:
- From a 1998 informatics workshop organized the DOE-NHGRI in which Debbie participated. During the meeting she raised important issues concerning the quality of genetic variation information contained within databases at the time.
- On Debbie’s involvement in a 1993 meeting of the Office of Technology Assessment (OTA) focused on “Legal Issues in Patenting Human DNA during the HGP.”
- Highlighting Debbie’s participation in a 1998 meeting for the Department of Energy and NIH’s five-year plan for the Human Genome Project.
Debbie served as an advisor on the International HapMap Project, a landmark NHGRI effort that followed the HGP. She advocated for more diversity in the human populations being studied and was a pioneer in developing techniques to understand the significance of SNPs (Single-Nucleotide Polymorphisms) and their connections to health and disease.
“I am saddened beyond words. Debbie, a beautiful and kind human being, was a friend and a great colleague. She served on the advisory group for the Center for Research on Genomics and Global Health and was a champion of diversity in genomics since the days of HapMap. I will miss her very much.”
Charles Rotimi, NHGRI Scientific Director
“Debbie recognized early on the importance of genomic variation and estimated how much two genomes differ from each other. She was important for pushing the field of genomics to consider genomic variation.”
Lisa Brooks, Program Director, Genomic Variation Program
Debbie was also a champion for women in science. She was often one of — if not the only — women in the room during critical discussions, and she was always an active and engaged participant.
“Debbie was no nonsense, but very respectful of the peer review process. One of my fondest memories of her was from an applicant interview. After the applicant finished their presentation Debbie had high praise, but the last thing she said was, ‘Your application has one flaw: your research team is too insular.’ The applicant replied, ‘No we are not, and I will tell you why.’ The two of them locked horns engaged in a fierce but healthy debate. Debbie was a very powerful woman that you just had to respect.”
Rudy Pozzatti, NHGRI Deputy Director, Division of Extramural Operations
Debbie worked to encourage genomics training for researchers from underrepresented groups. In 1999, her laboratory joined efforts with Maynard Olson at the University of Washington to lead an NHGRI-funded collaboration with the Tuskegee Institute’s Ed Smith on the “latest genomic technologies in sequencing and data analysis.”
Debbie was an educator and mentor for current and former NHGRI staff. She believed genetics and genomics education should be a foundational part of training future generations of clinicians and researchers.
“[Debbie] was a strong catalyst for the University of Washington community. I benefitted from her mentorship in the mid-2000s when she joined my dissertation committee and taught me everything there was to know about linkage disequilibrium and association studies. She knew how to ask hard questions and what each of her students needed to thrive. I will remember how she dragged half her lab to my dissertation defense to cheer me on, and also how much we all enjoyed her company at group dinners. She had a witty, visionary sensibility about her that made people pay attention, and she will definitely be missed.”
Lucia Hindorff, Program Director, Division of Genomic Medicine
Debbie’s laboratory at the University of Washington played a critical role in NHGRI’s Centers for Mendelian Genomics (CMG) program.
“I was fortunate enough to work with Debbie over the last several years as part of the CMG program. The CMG program was extremely successful, having identified the causal mutations underlying hundreds of rare genetic diseases, and Debbie's group at the University of Washington played such a critical role in that success. However, even the most successful efforts can be improved upon. I always enjoyed speaking with Debbie about those opportunities, and how we could take rare disease gene discovery to the next level.”
Lisa Chadwick, Program Director Genome Sciences, Division of Genome Sciences
One of Debbie’s most recent accomplishments was helping to launch the NHGRI-funded Genomics Research to Elucidate the Genetics of Rare diseases (GREGoR) program. Debbie led one of GREGoR’s five research centers at the University of Washington until her death, working closely with NHGRI staff.
“I have known Debbie since I was a graduate student. She was exceptionally smart, exceptionally funny and exceptionally dedicated to advancing the field of genomics. She brought a perspective that was deeply grounded in genomics and an infectious ability to effectively lead and collaborate. None of the programs would have made the significant scientific advances they have without her involvement. It is hard to imagine what NHGRI consortia meetings and workshops will be like without Debbie’s presence. She could be frank while simultaneously being a supportive mentor and cheerleader for what we were trying to accomplish at NHGRI. She was a role model of how to be an advocate for women in science, and or promoting opportunities for trainees and early-stage investigators. She will be greatly missed!”
Carolyn Hutter, Director, Division of Genome Sciences
Debbie was an innovator and leader in the field of genomics, and her legacy is larger than anything that could be documented in one place.
“For more than two decades, Debbie Nickerson has been a true leader in the application of genomic sequencing to precision medicine. Always pushing the existing boundaries with an infectious mix of creativity, vision, impatience, and a wicked sense of humor, Debbie exhorted herself and everyone around her to do more than they thought they could. Her imprint on genomic medicine is profound, and she will be sorely missed.”
Francis Collins, Senior Investigator, Center for Precision Health Research
Last updated: January 20, 2022