The Attack on Biomedical Research - Part 5, DEI

Disclaimer

The views I provide in this segment are founded in the following premises:

    ●    Everyone should be treated with dignity and respect

    ●    Everyone should have the opportunity to live a healthy life

    ●    Everyone should have ready access to healthcare

    ●    Everyone should have their health concerns addressed so as to achieve the above points 

When I say "everyone" I mean EVERYONE.  Your citizenship, race, ethnicity, religion, sexual orientation/preference, or any other label that might differentiate you from another person does not matter.  If you do not agree with these premises, then you may as well stop reading and go elsewhere in the digital domain, since you likely will not agree with anything I say below.  

Background

It is of interest to me how the Heritage Foundation and current administration have deftly hijacked the term "Diversity, Equity, and Inclusion" (DEI) to mean something totally different from its original meaning.  Their efforts have resulted in a large segment of the general public believing DEI meaning an unqualified person of color who was unjustly given an opportunity that should have gone to another person (primarily meaning a White individual).  It has also become a weird synonym for racism, with tons of things being labeled as being "DEI."

If you don't believe this is the case, I will digress here a bit and point out one example.  Immediately following the current administration's edict eliminating anything DEI related, groups across the country immediately began to scrub their websites of anything considered "DEI."  This was particularly true of government operated websites.  The various armed services began to scrub their websites by eliminating pages related to war heroes of color or the "wrong" sexual orientation, segregated units of color, anyone whose name included words that were on their verboten list (example, medal of honor recipient Thomas H. Gay), or any piece of equipment (yes, equipment) that had a name included words on their verboten list (example, the B-29 "Enola Gay" that dropped the first atomic bomb, which was named after the pilot's mother "Enola Gay Tibbets").  In the end, the only "White" heroes, units, etc. remained on these websites until public outcry forced many (not all) of them to be restored.  

The chair of the Board of Trustees for the Japanese American National Museum (JANM), Bill Fujioka, declared that JANM would scrub nothing from their websites.  When interviewed by The Los Angeles Times, Fujioka was quoted as saying "Our community is based on diversity, equity is guaranteed to us in the Constitution, and inclusion is what we believe in."  This stance highlights the fact that life is not just about a subgroup of the population nor is it about how a subgroup views the world.  It also highlights that we, as a country, have a long way to go in terms of achieving that idealistic society where everyone is treated equally with equal opportunity and "...with liberty and justice for all."  

In terms of science, I am going to confine my comments to two very broad areas that have been adversely affected by new DEI-based mandates; research that includes components that this administration considers "DEI" and training opportunities.  DEI in biomedical and basic research extends well beyond these two areas, but I focus on these two as they are the two I am most familiar with.  

DEI in Research

I start this section by sharing a shot of a key segment of a grant termination letter received by one of my colleagues earlier this year when the first of the National Institutes of Health (NIH) grants were being clawed back. 

Note some of the language, particularly the part that DEI-based studies are "...often used to support unlawful discrimination on the basis of race and other protected characteristics, which harms the health of Americans."  Huh?  This colleague was studying some of the challenges faced by certain racial groups and their ability to receive cancer treatment. 

One has to remember that disease, infectious or chronic, does not care about any of the political or social factors that divide us as a people.  It does not care about your political affiliation, religious preference, sexual orientation, religion, race, ethnicity....none of that matters.  However, the risks underlying these diseases are significantly affected by these factors, which is why we need to do research in an attempt to understand those inequities, how they affect health, and how we might rectify those inequities to improve health.  The idea that DEI-related work "...harms the health of Americans" is not only laughable, but cutting off such research is what will harm the health of Americans and people across the globe.  The fact that this administration is labeling research as "DEI-related" ignores the fact that health is very diverse, inequalities exist, and when trying to improve the health of Americans, everyone should be included.

An example of this is improving ones lifestyle to either prevent or deal with a chronic disease.  Typically, when you doctor notices you might be at elevated risk for a chronic disease like diabetes, hypertension, or cardiovascular disease, they will tell you to stop smoking, cut your alcohol consumption, increase your physical activity, and change your diet to eating healthier foods.  Sounds straightforward, doesn't it?  Unfortunately, because of historic racism, such as redlining, individuals in certain environments cannot easily make these changes.  Why is that?  What can we do to change that?  What are the components that create barriers for these individuals?  What changes are most effective?  These and other questions are research topics that are studied by a number of investigators.  There may also be genetic factors that play into how these inequities affect disease (an area of research interest for me).  However, researchers now find themselves unable to study these problems, because they are considered "DEI-related" and no longer an NIH "priority."  The politicization of science (a future topic in this series) has formalized a decision before ascertaining the research answer.  In other words, rather than research driving decisions, we are allowing politics to drive the decisions.  This has negative consequences for everyone's health.

We should be performing research to address everyone's health issues and identify those things we can change to improve the health.  Preventable morbidity and mortality is at the core of most biomedical research and the investment the United States has made has put us at the forefront and made us worldwide leaders in biomedical research.  However, these new restrictions and the subsequent downstream effects beyond the actual research, like unemployment for staff, is having catastrophic effects on U.S> research that even if reversed tomorrow, will have negative effects for decades.  The idea that somehow DEI-based research "supports unlawful discrimination" can only come from a political agenda that prioritizes certain groups or ideals over others.  In other words, using the veil of discrimination to claim unlawful discrimination.  Again, disease doesn't care about these things and removing this area of research limits our ability to reduce morbidity and mortality.

DEI in Training

A significant number of training programs have been terminated and research support for young investigators just starting their research careers have come to a screeching halt because the program or research has been declared "DEI-related" and, again, not an NIH priority.  However, the extremely biased interpretation of DEI taken by this administration has actually terminated opportunities for a wide spectrum of individuals; not just those of color.  I can use myself as an example.

Although I was fortunate that my father worked his ass off to provide us with a middle class lifestyle, the fact that both my parents never finished high school and English was not their primary language created certain barriers for my own educational path.  My parents did not have "connections" to help me find extracurricular activities like research experiences that my "connected" friends easily found.  I could not turn to them for advice on how to apply to college or what to write in my personal statement.  Although technically middle class, our financial situation raised concerns about how to pay for college.... my folks nor I were aware of financial aid.  In other words, I had to navigate all these things pretty much on my own, relying on friends and my high school's college counselor (who, in retrospect, was not all that good).  I did have the great fortune that my folks put a premium on education and I performed well in school.  So, when I got accepted into various universities, the financial aid was fairly generous.  When I told my folks I wanted to go to graduate school, my dad thought he was going to have to fork out more money.  However, I was supported by an NIH training grant that covered my tuition and paid me a stipend.  Similarly, when I transitioned to my post-doctoral training, I was initially supported by an NIH training grant, before I was able to apply for and received my own NIH fellowship.  These opportunities allowed me to apply for and receive my first independent grant, a young investigator award from the American Diabetes Association.  That initial award then led to my first NIH research grant.

The various programs that supported my training and that first young investigator award are what allowed me to build my scientific career and become the successful biomedical investigator I am today.  Without them, it is not clear to me how my career path would have evolved.  However, with NIH now eliminating many training programs arguing they are "DEI", many young investigators will not have the same opportunities that I had.  I was an example of why we need such programs, but I had one advantage that many did not....I lived in Los Angeles.  There were numerous universities, research labs, and other institutions that would allow me to seek training opportunities.  But what if I had lived in the middle of the country where the density of universities is much lower?  What if I came from a low socioeconomic family who could not afford to send me elsewhere to find such opportunities?  

These are just a some of reasons why these training programs exist.  It's not about advancing certain individuals because of their skin color or religion.  Many are just like I was...disadvantaged due to various other circumstances.  These programs help identify young individuals with great potential to help nurture them and train them to become our next generation of scientists.  These training programs recognize that society is not fair and equitable and that we need to uplift some who show great promise, but face certain barriers.  It's not about giving someone an unfair advantage.

This administration faults DEI as discriminatory and that merit should be a primary factor in deciding many aspects of society.  Merit is important and should be a significant component of any decision.  However, making decisions solely based on merit assumes all other things are equal.  Sadly, society does not work that way, which is why many of these training programs were created.  Bright and intelligent people of color, with physical disabilities, or with financial hurdles many times do not get to choose science as a career path because of those inequities.  Many of these training programs were designed to give them opportunities.  I have been involved in three such program, one of which I co-directed.  The goals across all three of these programs are the same; provide research opportunities to undergraduate students who might not otherwise might not have access to research opportunities.  Fortunately, one of these programs exists without Federal funding and another so far continues to receive Federal funding.  However, the one I co-direct has lost its Federal funding and likely trained its last cohort this past summer.  It is doubtful we will identify an alternative source of funding by next summer.  Our program, over the past 7 years, have helped over 40 undergraduate students from varied backgrounds gain research experience and transition into medical or graduate school.  These include a student with a hearing disability, a student from Guam, and a Native American student living on a reservation, just as examples.  I was extremely proud of the students we trained and how their various careers are moving forward.  I worry about those who might be affected by these recent changes that may derail their career paths.

DEI means different things to different people.  However, as Bill Fujioka noted, our communities are based in diversity (even if you cannot see it), equity is supposed to be guaranteed to us in the Constitution, and we should not be excluding anyone just because we do not like some perceived characteristic.  Merit-based decisions are only fair when the playing field is level and these programs were working to try to make that playing field a bit more level.  They were not designed to replace merit with some other characteristic.  In science, that's the last thing you want to do....have someone who is not qualified to be doing the job (the next topic in this series). 

The Attack on Biomedical Research - Part 4, Morale in Science

Slight break in my series due to both a family and personal health issue that had me a bit sidelined for a while.  But, I'm now back online and moving forward with the series.

The progress of science is, like many things, tied to the morale of those who are doing the work.  I have been doing biomedical research for over forty years (sure doesn't seem that long).  During that time, I have seen both highs and lows both personally, but also as experienced by the industry as a whole.  There were exciting times where one could see new avenues of insight and research direction opening new discoveries and directions.  There were other times where significant roadblocks were thrown in front of us, resulting in scientific progress crawling along at a snail's pace.  The one thing I learned over the years of highs and lows, is that keeping my head down, focusing on my science, writing my grants and papers, and thinking of the next step regardless of what was going on around me, would get me through the tough times.  

However, this new political environment we face continues to dramatically change science, primarily not in a positive direction, has me and others questioning not just our personal futures, but that of scientific research in general.  Some of the issues that have contributed to this massive shift in science I briefly touch on below.

Public Trust in Science

There has been a number of major shifts in society over the past couple of decades.  One of them being the lack of public trust in science.  This shift in how the public perceives and understands (or doesn't understand in many cases) science has changed how many of us in the field operate.  Part of this shift can be blamed on scientists themselves.  The broad model had always been that the scientist would do the research, write up the results for publication in a scientific journal, and then move on to the next question to be answered.  The publication of our results would be considered the dissemination of our findings, but that audience was generally the scientific community.  How many in the general public actually reads the scientific literature?  Thus, dissemination of our findings to the broader public was usually left up to others. 

Typically, your institution's press operation takes on the responsibility of marketing your findings out to the general public, which means the media becomes the vehicle by which information is disseminated to the public.  Unfortunately, the media gets is wrong too many times, hypes up results, report contradicting findings from different studies as if they were all equally valid, and sometimes get the facts just totally wrong.  John Oliver did a really nice piece on this on his show Last Week Tonight.  The lack of integrity in how the media disseminates scientific information only contributes to the lack of understanding of science and the distrust of science.  Science is not perfect, is many times inefficient, and as I teach my students, no single study proves anything.  Not all scientific studies examining the same question are equal and each needs to be carefully evaluated.  Thus, it's not surprising when the public sees the media reporting contradictory conclusions and get the impression that scientists "can't make up their minds" about a given problem.

Scientists have never been trained to move beyond the scientific publication to help educate the public.  A minority of scientists have embraced social media to do this, but frankly too few have done so and unfortunately a large number of those who do, seem to be doing it more for the "fame and fortune" aspect, rather than the educational aspect.  Scientific journals have also made attempts to make what they publish more publicly accessible, with mixed results.

In this new digital age, the lack of engagement by scientists, the poor reporting by the media, and the variety of digital outlets has allowed those who have a personal agenda to fill the apparent void with pseudoscience, conspiracy theories, and political agendas.  These individual viewpoints have gained more traction thanks to automated algorithms that feed individuals with only things they want to hear, rather than feeding them correct information.  Traction is gained even more so by the invocation of "First Amendment Rights" rather than whether information is factual or not.  We have seen this most prominently with the recent pandemic where sound science was ignored and even vilified in favor of anecdotal information or even wives' tales.  The situation was further exacerbated by people attacking and ignoring scientific experts who have studied such problems for decades, in favor of political hacks or so-called "online influencers" with zero to less-than-zero scientific knowledge or expertise.  Even our President claims to rely on "common sense and gut instincts" rather than scientific expertise.

The increased lack of public trust in science has extracted an immeasurable toll on morale in science.  Students come in with a level of skepticism that has to be overcome that we have never previously encountered.  This requires time and energy we have never had to include in previous teaching or training of students.  The public questions everything we do to try and improve health and quality of life as if it was tied to some giant pharma-conspiracy to keep everyone sick and tied to profit making on medications.  It's as if The Flat Earth Society suddenly captured the national conscience and everyone now believes the earth is flat.  Society is moving in a very dangerous direction that has a direct impact on the morale of science.

This lack of trust in science has widespread implications, particularly in terms of public health.  Vaccines are an excellent example where trust has eroded to the point where diseases we have not seen in decades are appearing across the country.  The hard work that was put into developing vaccines, implementing their deployment, and ensuring their levels to protect the public has degraded primarily due to lack of trust in science. There needs to be a concerted effort to correct this shift in the public perception, as it has implications for future science and the training of scientists.

Political Leadership and Politicization of Science

I have recently been expressing to colleagues that we seem to be undergoing our own version of China's Cultural Revolution, where politics dictate everything.  This is the first time in my career where political leadership have directly interjected themselves into scientific decisions, particularly what research will or will be funded.  The initial purge of research grants based on the 197 verboten words sent shock waves throughout biomedical science, but was just the beginning.  Much like how this administration implemented many of their changes, the claw back of grants based on these words was accomplished by simply doing a simple word search.  If any given word appeared more that 6 times in a grant (including titles of citations from the literature), the grant was flagged.  How bad was this implementation?  Just as a minor example, the word "trans" was part of the list, obviously in reference to this administration's dislike of "transsexual."  However, the term "trans" is used in other scientific contexts, like transgenic mice (genetically altered mice), translocation (movement of something from one location to another), cis vs. trans genetic regulation (regulatory elements on the same DNA stand vs. the opposite DNA strand), and other similar examples.  All these grants were initially frozen and tagged before someone finally figured out they had nothing to do with trans-sexuality.  

However, things did not stop at a mere set of words.  Research perceived to be motivated by Diversity, Equity, and Inclusion (DEI) has been pretty much terminated.  DEI will be a separate topic in this series, but let me just say at this point that the administration's definition of DEI has had extremely negative effects on scientific research, the careers of individual scientists, the training of new scientists, and eventually will have negative effects on public health.  

The Department of Health and Human Services (HHS) is currently led by an individual who has ZERO training or experience in science.  While some of the things he says are broadly true and need addressing, much of the details and justification he provides is just outright wrong, not based in any science, and based on his own perceptions rather than facts.  Such an individual is a huge danger to the overall biomedical enterprise of the U.S.  You can immediately see the negative effects he has had in the short handful of months he has led HHS.  He has removed scientific experts and replaced many of them with charlatans or non-scientists.  He has interjected his own opinions into the scientific process to push for outcomes he prefers to see, rather than letting the science determine the outcomes.  None of of us do science based on a political viewpoint or agenda.  Why?  Because many of the problems we study don't give a flying fuck about your political affiliation, sexual orientation, religious preference, or any of the other social factors that separate us as a society.  Cancer cells only care about replicating.  Viruses only care about reproducing.  For those who think chronic diseases are new problems created by the pharmaceutical industry know nothing about this history or challenges in studying these diseases.  Most have existed way before the pharmaceutical industry was established.  

The degradation of scientific leadership, the layoff of thousands of skilled workers by DOGE, the realignment and restructuring of institutions like the CDC and FDA to align with political views continues to degrade our scientific industry, our leadership in science, and most importantly is leading to a erosion of the health of our nation.  Superimpose upon that changes to Medicare/Medicaid, Federal support for food safety programs, the extinction of USAID, and other changes to our government can only push us in one very negative direction.

Restructuring of the National Institutes of Health

There are many negative changes going on at the National Institutes of Health (NIH).  These are too numerous to delineate here, but I will briefly touch on five items that have directly affected morale within science.

First is the overall effect of the various changes that has many scientists questioning their futures.  This is particularly true for young investigators just starting their careers or those trying to decide whether to apply to graduate programs.  The overall attitude, perceived or real, is that America doesn't want them and that their contributions to society will not be appreciated.  This could be the start of a brain drain for the U.S. as foreign countries see opportunities to attract students and scientists to their countries.  Many Ph.D. programs have announced no new incoming classes as support for students have disappeared.  Seeing this, many foreign countries are actively cherry picking young Americans to start their training or careers in foreign lands.  This is not a good thing for America.

Second, the injection of politics and political views into the funding of science has many of us extremely disturbed and concerned.  This approach aligns with how Chairman Mao implemented the Cultural Revolution in China.  Sure, you can do science, just so long as it aligned with how the Central Committee defined things, which was political fealty to Mao-ism.  That's essentially what is starting to happen within the NIH.  Freedom of speech and freedom to choose your scientific question is being replaced by political fealty to whatever ideology the current administration and leadership espouses.  Furthermore, the expert leadership that has guided the NIH research programs, both intramural and extramural, are being replaced by charlatans and political hacks who only have personal or political agendas.

Third, the proposed changes to the NIH budget and overhead will have devastating effects on science in America.  I previously covered the overhead issue in my first post in this series.  However, more recent proposed changes will have additional devastating effects on science.  First, the proposed reduction of the overall NIH budget by 40% will basically gut the American research enterprise.  Coupled with the change to overhead, the loss in research projects, loss in research talent, the inability to train future scientists, and the impact on American health will be immeasurably bad.  

Additionally, the administration has changed the way funds for grants will be awarded.  Traditionally, when one was awarded a multi-year grant, you were required to submit a progress report at the end of each year before the next year's funds would be awarded.  This was a mechanism to ensure that each project was meeting its goals and making appropriate progress.  This also allowed NIH to spread the funding of a given grant across a number of budget years, without having to immediately fund the entirety of the project.  This meant that more projects could be funded across a number of years.  

However, this administration is now requiring that grants be fully funded the year they are awarded.  That means there will be less funds for a given budget year and less projects funded.  This recent change has forced changes to the "payline" (the rate at which grant applications are funded).  The National Cancer Institutes recently announced their payline for grants will now be the 4th percentile.  Other institutes are moving to single-digit levels of funding, although I have not heard what those exact numbers will be.  My guess is most will probably fall around 6-8 %-tile..  So what does this mean?  It means that for a given funding cycle, your cancer research grant application must score in the top 4% nationwide, in order to be funded.  Think about what that means.  Given the thousands of scientists writing thousands of grant applications each cycle, you basically have to be better than the best in order to get funded.  I have been fortunate to have been fairly successful in getting my grants funded and my scores have usually fallen in the 10-15 %-tile range....twice I scored in the single digits....an achievement I am quite proud of.  But, under the new paylines, even at my best, the chances of my grants getting funded have significantly fallen.  This drop in the paylines will probably have the greatest effect on morale in science as funding begins to fall outside of the reach of the majority of scientists.

 Fourth, the NIH is realigning the grant review process and centralizing it into the Center for Scientific Research (CSR).  Previously, CSR handled the administrative parts of grant applications, but then would assign them to the different institutes and the institutes would operate grant review panels, identifying expertise appropriate for a given grant application review.  The final decisions would then be sent back to CSR for final processing.  Now, the entire process is to be handled by CSR and the institutes will no longer be involved in the grant review process.  While in the long run, this change may prove to be an improvement (I have no a priori evidence to suggest it won't), short term, this is a disaster.  Primarily because NIH and CSR have not been transparent in how the new process would work and who might be involved.  Anecdotal evidence suggests individuals who are not familiar with your research area may be handling your grant and its review.  It does not help that NIH will simultaneously be realigning the institutes with some being eliminated and others merged into new entities.  None of us can foresee what our scientific futures will look like in this newly re-vamped NIH.

Fifth, is the discussion of requiring NIH-funded scientists to only publish in some new NIH-based publication system that RFK, Jr. has envisioned.  Again his lack of scientific background and vague perception that scientific journals are all controlled by the pharmaceutical industry and rife with corruption, graft, and bias has resulted in an idea that is not necessary and problematic in its own right.  While the current publication system is not perfect and does need some much needed overhaul, it is definitely not as RFK, Jr. describes.  Furthermore, given the direct injection of politics into science by the current secretary and his minions, I would have no confidence that any publication operated by the current administration would be to the benefit of science.

So, in closing, morale in science is probably at an all-time low.  Surveys like the Biorender State of U.S. Science Funding: 2025 Report bear this out.  My own conversations with friends and colleagues across the nation also bear this out.  Too many bad things have been happening all at once.  I have seen senior colleagues choosing retirement over having to deal with what it going on.  People my age struggle with that option....while appealing on one end, I still have things I'd like to accomplish before I retire.  It's the thing that has driven my entire career; making my tiny contributions to improving the health of Americans and people across the globe.

But you can also see what is happening based on active protest to what the current administration is doing.  NIH scientists and staff issued the Bethesda Declaration raising their concerns regarding the staff cuts and other changes at the NIH.  Their declaration was publicly hosted by the group Stand Up for Science, who has taken stances on other issues such as changes at the National Science Foundation, National Aeronautics and Space Administration, Food and Drug Administration, Center for Disease Control, and others.

At the end of the day, even if everything that has happened is reversed and returned to "normal," the damage has already been done.  We will not recover from these past 6 months for at least a decade.  That's not to say everything before the Trump Administration came to power was perfect.  There were very clear improvements and changes that were necessary.  However, the sledgehammer this administration has wildly wielded within the glass house of scientific research has had only predictable outcomes.