Federal Workers Speak

Theora Tiffney National Institutes of Health

Theora (Theo) Tiffney was a Communications Specialist with the National Human Genome Research Institute at the National Institutes of Health. Following graduate school, Theo joined the federal workforce through a Science and Technology Policy Fellowship offered through the American Association for the Advancement of Science (AAAS). Theo’s work entailed providing information to the public about advances in genetics and resources available to those diagnosed with genetic conditions. Their position was terminated March 1, 2025. In our interview, Theo shared what led them to work for the federal government and what the loss of this work means for the public.

I had always aimed for a career in public service. In my PhD work in bioethics, policy, and law from Arizona State University, I was looking at intellectual property policy at the federal level and how this gives us overpriced drugs that the populations who need them cannot access. I specifically studied hepatitis C and the issues with a drug that costs $84,000 per course of treatment for a disease that affects some of the poorest people in the world.

When I went to graduate school, I didn't expect to get into medical ethics, but I quickly found that medical ethics are the major building block of trust in public health. Applying medical ethics in a way that's sensitive to the history of the community that you're working with is how you incorporate better practices moving forward. When I finished my PhD in December, 2020, I applied for the AAAS Science and Technology Policy Fellowship in D.C., which aims to get scientists into government to better inform policy-making. That entailed one year at NIH in the Office of AIDS research, and one year at the National Artificial Intelligence Institute where I worked on establishing guardrails for AI use in serving our veterans through the Veterans Administration.

From there, I accepted my job with the National Human Genome Research Institute. As a communication specialist, I handled our social media content and public-facing science communication. I also had a small research portfolio that was focused on bioethics and the history of genomics. Juggling those two was really important to what we were doing because the history of genomics and genetics in the United States has some serious skeletons in the closet, especially the specter of eugenics, and being open and honest and clear about that history is the first step to building trust in the science that we are doing in the present day.

At a basic level, you want to know where your tax dollars are going. That was our responsibility in communications, to shine a light on what's happening at NIH, and to help foster the careers of scientists who are trying to cure diseases such as cancer or dangerous childhood genetic conditions. There were a lot of different reasons people might access our website. If you had a child diagnosed with a condition, or if you had a genomics panel done for investigating a health question and there were some results that came in that were concerning, our website was intended as a first stop in a patient's journey to understanding their condition and to finding NIH resources like clinical trials and other support. The website itself is still there, but most of the content is gone.

One side of our work was talking to the public about the research we're doing and why it matters. We also had a whole wing of communications that provided information about different types of careers you can pursue as a geneticist. We disseminated information about how anyone, anywhere in the country, can become one of the folks trying to cure cancer or genetic conditions that are fatal before the age of five.

Part of my research portfolio has been on Valley fever, which is a disease caused by a small soil-dwelling fungus in the desert southwest of the U.S. and in the Americas in general. Valley fever is becoming a much bigger problem due to climate change, because the environments that support its growth are expanding. Why 10% of the population that contracts Valley fever is severely affected has been the central mystery of the field for the last 100 years. One commonly accepted explanation claims that people who are Black or Filipino are more likely than people of other racialized groups to develop severe disease. This is questionable from a scientific standpoint, because race is a social category, not a biological one, and as soon as you start assigning biological traits to race, you are getting into some very dangerous territory, territory that repeats the basic assumptions of the eugenics movement in this country at the turn of the last century. Because of the historical and social implications of this racialized narrative, I am working to better understand how it arose and encourage researchers in the field to more critically examine the assumptions inherent in its claims, especially as we move toward a much more genomic understanding of what constitutes high risk for Valley fever.

Up until January, 2025, NIH Genome Research Institute was doing a massive push to recruit and support underserved minority groups in the field of genetics. In being honest about the history of this field and trying to course correct, there was some serious work going on to reexamine bias and racism in the field’s history. This is important at a time when we’re developing more powerful genetics tools—with such potential, it’s important not to recreate the mistakes of the past. Starting January 20 of last year, there was a total about face, a stunning about face, where all of our work toward a more equitable, honest approach was discarded. The communications office was instructed to delete articles that discussed the history of eugenics and dealt frankly with the ways medical research was misused in the past, and to destroy resources for underserved communities.

My communications team was 20 to 30 people. I often bounced between them and the policy team, which was another roughly 10 people. The Office of the Director, in which both of these offices were situated, was quite a bit larger, about 100 people. After April 1,  2025, I know of four people who kept their jobs. The entire communications team is gone. The entirety of the history team is gone, except for one postdoc who continued working without their mentor.

In addition to the information we supplied to the public, we lost the concentrated effort to be honest about the history of medicine in the U.S. I want to amplify the extent to which the Health and Human Services decisions recently have been guided by eugenics. RFK, Jr is a eugenicist — his maniacal focus on diet over actual disease prevention and treatment and his demonization of Americans with disabilities are lifted right out of the eugenicist program in the early 1900s. This is a hugely important issue, because the medical profession has such profound power to reach into the most intimate aspects of our lives. When the medical profession is guided by people who target our most vulnerable and seek to make them invisible, the abuses that result are staggering.

You have to give up a lot to be a federal employee. You have security clearances you have to complete. You have to check about publishing or speaking in public. You have to register international travel with the Department of State. You can’t even let someone who is not a close friend buy you lunch if it’s over twenty dollars, for ethics reasons. It’s a lot of constraints. People accept this because it’s worthwhile to do the work.

I really wanted to make this country a better place. We make a lot of promises in our Constitution and in our laws and in what we say to the world. I wanted to be one of the people helping to make this country keep its promises. Working in the federal government seemed like the most effective way to put my skills to use. 

After losing their job, Theo was not able to find work in the D.C. area. Positions in science communications and science policy became scarce to nonexistent. Theo and their wife had married in the summer of 2024 and purchased a house in Rockville, MD. At the time of the interview, they had put their house on the market and were moving in with parents in California. Theo plans to continue with independent research on Valley fever, with hopes of paving the way for an academic job should the job market improve. Theo has signed up with Run for Something and is considering running for local office in California.