DEI policies | The DNA Exchange

This is a two part blogpost. Part 1 focuses on the impact of Trump’s policies on genetic counselors. Part 2, which I plan to post next week, will focus on the impact on patients.

When everyone is up front and they’re not playing tricks
When you don’t have no freeloaders out to get their kicks
When it’s nobody’s business the way that you want to live
Oh my mama told me
There’ll be days like this
(From “Days Like This” by Van Morrison, 1995; not to be confused with the delightful Shirelles 1961 song with a similar name)

Many genetic counselors are zombie-shocked over the cruel, thoughtless, and harmful policies of Donald Trump (Pronouns: I!/ME!/MINE!). Genetic counselors hold a broad range of political beliefs but most tend to lean left. But liberal and ultra-conservative genetic counselors share a common set of values around patient care, as embodied in our Code of Ethics, re-enforced during our training, and laid out in our textbooks. So even if you support some of Trump’s non-medical policies, surely there should be near universal condemnation, or at the very least concern, over the implications of Trump’s policies for our profession and our patients.

Much of what I discuss below is speculation on what may happen and is not meant to be an exhaustive analysis. The policies are for the most part new and are only starting to impact medical care. Some are working their way through the court system but it remains to be seen how the rulings will turn out and if the Administration will ignore them. Also, the policies tend to change with, as far as I can tell, the direction of the wind (see tariffs). Hopefully, my speculation and predictions will not fully pan out.

First off, the employment of many genetic counselors is at stake. Genetic counselors who work at the National Institutes of Health (NIH) or the Department of Veterans Affairs or other federal agencies such as the military may have their positions may be eliminated by the reckless DOGE budget cutting antics (putting Musk in charge is like hiring Moe, Larry, and Curly to make your car run more efficiently. Man, wouldn’t you like to take a wrench to his nose). In addition, the salaries of some genetic counselors

engaged in research are fully or partially funded by federal government grants. With the cancellation of research proposals that address DEI in any way shape or form – even if DEI is only mentioned in the proposal – or allude to any of the many other topics that get Donald’s knickers in a twist, funding for these positions may be lost. The employment effects may be further worsened as Trump targets federal funding for universities that don’t conform to his distorted view of the world, such as the recent canceling of $400 million in federal funds allocated to Columbia University under the guise of concern for harassment of Jewish students on campus. The safety of students is a serious concern to be sure, but cutting off funding is just an attempt to stick it to a “woke” university. All this at a time when the job market for genetic counselors is less than ideal.

The underlying economics of genetic counseling services will likely hinge on genetic counselors becoming covered providers under Medicare. The National Society of Genetic Counselors (NSGC) has been working for over a decade to achieve this goal, which seems to be frustratingly closer but not quite there every year. As I noted in a previous post, should the Access to Genetic Counselor Services Act actually come up for a vote in Congress, congressional members may reject it because of NSGC’s DEI policies, as clearly articulated in its gender-first pedigree nomenclature Practice Resource. The profession may miss out on becoming Medicare-covered providers because we are trying to be decent human beings who respect the dignity of our patients.

Trump’s policies on limiting the funding NIH research has the potential to impact the types of research that genetic counselors can engage in or benefit from, especially if some aspect of DEI is involved. The net effect will be delivering sub-standard and unresearched care to some of our most vulnerable patients. Here are the NIH research funding guidelines, as outlined in a recent NIH memo:

Category 1 – The sole purpose of the project or conference is DEI-related – WILL NOT FUND
Category 2 – Projects or conference that partially supports DEI activities – WILL FUND ONLY IF THE DEI ACTIVITIES ARE ANCILLLARY TO THE PURPOSE OF THE PROJECT AND ARE ELIMINATED FROM THE GRANT
Category 3 – Project or conference that does not support DEI activities but may contain language related to DEI – WILL FUND ONLY IF DEI LANGUAGE IS REMOVED
Category 4 – Project or conference that does not support any DEI activities – CAN BE FUNDED.

And here are the justifications for these guidelines, from an appendix to the same memo:

DEI: “Research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are anti-thetical to scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment and ultimately do not enhance health, lengthen life, or reduce illness. Worse, so-called diversity, equity, and inclusion studies are often used to support unlawful discrimination on the basis of race and other protected characteristics, which harm the health of Americans.”
Transgender issues: “Research programs based on gender identity are often unscientific, have little identifiable return on investment, and do nothing to enhance the health of many Americans. Many such studies ignore, rather than seriously examine, biological realities.”

How much does the Republican Party hate LBGQT+ people? During the 2024 campaign, it spent one quarter of a billion dollars on anti-transgender and anti-LBBQT+ advertising. This is a policy of pure hate and part of the attempt to legislate LGBQT+ people out of existence. Call it administrative genocide.

Trump’s policies also have direct bearing on how genetic counselors document patient encounters in the medical record. Being identified as transgender or non-cisgender or non-heterosexual places patients in a very vulnerable position. Once could easily imagine the government obtaining a warrant or whatever legal document to obtain the medical records of any of our patients; HIPAA guidelines allow healthcare providers to release records without patient permission “as required by law (including court orders, court-ordered warrants, subpoenas) and administrative requests.” An Executive Order signed on January 28, among other horrible things, proclaims that it “Stops federal agency efforts, specifically by the Department of Justice, the Department of Homeland Security, and Federal Trade Commission, to protect patient and provider privacy and security.” Now imagine if a patient had gender-affirming care in a state where it is banned. This puts genetic counselors in a very difficult position. On the one hand, knowing if a person is transgender or non-heterosexual can be important for their healthcare guidance and genetic counseling. On the other hand, documenting that information in the medical record can potentially bring great harm to patients. This is going to require some awfully complex and sensitive discussions with patients. But mostly it will probably just discourage them from seeking medical care. Think I am exaggerating? Well, recall that in 2023, Tennessee’s Attorney General forced Vanderbilt University Medical Center to hand over the medical records of their transgender patients.

This same dilemma holds true for documenting the medical, reproductive and family histories of patients who have undergone a termination of a pregnancy, particularly in states with strict anti-abortion laws. The patient or the provider who performed the abortion could face jail time.

Trumpian attempts to remove “unacceptable” DEI language from federal government discourse and to force federal agencies to modify the information they provide to conform with the president’s views and policies threatens the utility or even the very existence of some of the reference tools and research projects that genetic counselors rely on every day. If we can no longer believe a word that comes out of the mouth of the president or his representatives, and if his policies affect what can be said by government agencies, how are we to trust the content of PubMed, ClinVar, ClinGen, the Morbidity and Mortality Weekly Report and other CDC publications, etc.? What will become of the Metropolitan Atlanta Congenital Defects Program, which was established in 1967 by CDC to monitor the incidence of congenital conditions in the Atlanta area or the National Birth Defects Prevention Network, which maintains a national network of surveillance of congenital conditions? What will be the fate of the International Clearinghouse for Birth Defects Surveillance, a CDC-sponsored program which brings together birth defects monitoring programs from around the world? Maybe the DOGE apparatchiks, in all their glorious ignorance and hubris, will just eliminate them altogether.

Trump’s policies could threaten the safety of some genetic counselors in their workspaces. They may now feel physically and psychologically unsafe at work, particularly those who are not White or heteronormative. They don’t know if their employers will protect them or fire them. Co-workers may blame them for budget cuts that result from decreased federal funding or accuse them of being “DEI hires.” They may be concerned that patients will feel free to harass, criticize, abuse them, or even report them to “the authorities.”

Genetic counseling has a history embedded in eugenics, a history that the profession has tried to disentangle itself from. Here we are again, having to confront the specter of eugenics in our midst. In another chapter from the book titled “We Don’t Learn Any Lessons From History,” the policies and rhetoric of Trump et al. channel the spirit of the Eugenics Record Office. Republican labeling of immigrants as rapists, thieves, genetically inferior, and of low intelligence is the exact same language employed by early 20th century eugenicists to describe, among others, Italian and Eastern European immigrants “flooding” the country (incidentally, my grandfathers were born in Italy and Poland but managed to arrive before the 1924 Johson-Reed Act put extreme limits on the number of immigrants allowed from those countries). Ultra-conservative eugenicists, such as Madison Grant in his 1916 book The Passing of the Great Race, stoked fears of “White Replacement” whereby Northern and Western European American stock would be replaced by large numbers of undesirable immigrants and their many offspring (at the time, Southern and Eastern Europeans were considered a separate race from people of Anglo-Saxons and Scandinavians). So too do Trump, Musk and their ilk seek to limit immigration, deport immigrants, and push pronatalist policies that encourage “native-born Americans” to have more children.

“Leave now. If you don’t, we will find you and we will deport you. You will never return.”
Kristi Noem, Secretary of Homeland Security, from a TV commercial threatening immigrants

“Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”
– Emma Lazarus, *The New Colossus*

I have heard grumbling from some genetic counselors that they are upset by the lack of a strong voice and policy action from NSGC. They want to know just where their professional organization stands on these issues and how it will support its members and the patients they serve during these tumultuous times. NSGC claims to be committed to DEI issues, and this is a test of the organization’s sincerity and willingness to fight for their principles. The grumbling genetic counselors may have a point.

*On the left is a political cartoon from 1903; on the right is a political cartoon from The Chattanooga Times from 2010.*

Of course, all these policies and Executive Orders affect the care genetic counselors can provide to our patients, who will suffer the most. I will take up the topic of the impact on patients in the next week or so in Part 2.

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This Friday, March 14th at 4 PM EST, several genetic counselors are independently organizing a mutual support zoom call for genetic counselors to share in a safe and supportive space their stress, anger, frustration, views, anxieties and whatever other emotions they are experiencing as a result of the Trump insanity. If you are interested in attending (no participation required), contact Jehannine (J9) Austin (jehannine.austin@ubc.edu) or Kate Wilson (kate.genetics@gmail.com) or if you are on BlueSky, Naomi Wagner (@naomi-cgc-bsky.social).

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In a previous posting I suggested some actions and organizations that genetic counselors can consider doing or joining if they feel the need to fight back in some way. Jill Fonda Allen has since offered one other organization to consider getting involved with – Indivisible, which, per their website is “a grassroots movement of thousands of local Indivisible groups with a mission to elect progressive leaders, rebuild our democracy, and defeat the Trump agenda.” Thank you, Jill.

Back on January 20th, American democracy and decency began to swalllow a poison pill of its own electoral making. The fallout has been all kinds of horrible, nationally and internationally, except in Moscow where Putin is having a belly laugh because America is doing his dirty work by destroying itself. The US Constitution is being shredded. People who are transgender, gay, non-White, and all the other non-majority varieties of American demographics feel that their very lives are threatened. The employment of every “DEI hire” (racist code word for Black) is on the chopping block. Many of our patients may lose access to health care through Medicaid funding cuts, fear of being deported, or prohibitions of basic medical care for transgender people. We are looking at the potential destruction of the NIH, one of the world’s great research institutions. Genetic counselors employed by the federal government or on government grants may either lose their jobs or be forced to work in an ethically intolerable environment. The terrifying list goes on and on. The over-arching hateful personal message of these policies is “If you ain’t cis-hetero-White, you ain’t right.”

I have nothing original to add to what has already been better said by others about these matters.^* Here I want to focus on the implications of the Updated NSGC Guidelines on Pedigree Nomenclature for the passage of the Access To Genetic Counselor Services Act (I am one of the authors of those pedigree guidelines, and incidentally, a minor revision of some of the Tables will soon be published). A small matter in the great scheme of things, but of particular salience to the future of the genetic counseling profession. The financial survival of clinical genetic counselors in the US hinges on being recognized as Medicare providers. This effort has been ongoing for some 20 frustrating years or so but over the last few years we’ve started getting closer to success, fingers crossed.

So why should the new pedigree nomenclature crash those hopes? After all, they are just a bunch of geometric shapes. But we have given meaning to those shapes, meaning which directly clashes with the Executive Edict, er, I mean Order “DEFENDING WOMEN FROM GENDER IDEOLOGY EXTREMISM AND RESTORING BIOLOGICAL TRUTH TO THE FEDERAL GOVERNMENT,” that, based on ignorance and hate, defines sex as follows: “(d) “Female” means a person belonging, at conception, to the sex that produces the large reproductive cell. “Male” means a person belonging, at conception, to the sex that produces the small reproductive cell.” Well, I guess that those of us who were lucky enough to be born with “reproductive cells” are going to have to line up and start getting those reproductive cells measured and compared. I wonder which cells they are going to measure – Sertoli cells? Leydig cells? Spermatids? Uterine cells? Luminal epithelial cells of the uterus? Ovarian thecal cells? All are necessary for reproduction, and all of different sizes. Of course, at conception, no one has any of those cells so I have no idea what these criteria mean. And sex can be categorized by chromosomes, genes, anatomy, or hormonal profiles, all biologically plausible criteria but not uncommonly incongruent.

The head of the US government has made it clear that any definition of sex that, uhh, deviates from this definition is the product of “Woke” ideology and DEI policies (I really don’t know what constitutes Woke ideology – compassion? decency? the teachings of Christ? – but I reckon it’s better than Sleepy ideology). Anyone or any organization that supports Woke ideology is an enemy of the state and will not be tolerated. The pedigree nomenclature, by emphasizing the importance of gender and the subtle shadings of biological sex, is diametrically opposed to US government policy. All the more reason to support the nomenclature, I say.

But what happens if the Access to Genetic Counselor Services Act actually comes up for a vote before Congress? Well, perhaps the most publicly available product of the genetic counseling profession is the pedigree nomenclature. Sure, within the NSGC itself, there are all kinds of policies and initiatives that support DEI, programs that have been met with varying degrees of success and frustration. By and large those are internal, and not openly available to non-members. But as an Open Access article, the pedigree nomenclature is widely available to anyone with Internet access and the nomenclature is the standard for most genetics journals, not just the Journal of Genetic Counseling. More tellingly, the simplicity of those symbols that allows them to effectively communicate complex information also allows them to clearly communicate just how much they contravene the Trumpian concepts of sex and gender, even to someone who has minimal grasp of human biology. I can imagine an NSGC President testifying before Congress about the bill and being asked “So, Current NSGC President, in your organization’s sanctioned pedigree guidelines, I see squares and circles and common sense tells me that those are males and females, respectively. Can you tell me what this diamond symbol is? And what are those funny abbreviations like AFAB mean beneath some of the symbols? Are genetic counselors using geometric symbols to secretly support Woke DEI propaganda? The US government does not support an organization that does not preach biological truth!”

I am not saying that we should publicly reject or downplay the Pedigree Nomenclature Guidelines or NSGC’s DEIJ initiatives. To do so would be an act of moral cowardice, a betrayal of our colleagues and patients, and just plain wrong. We need to fight like hell for them, even if we have to pay a steep professional price. There are more important things in life than Medicare coverage.

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*- For those looking for voices of political sanity, I recommend considering subscribing to The Contrarian Substack (comprised of former Washington Post reporters, among others), The American Prospect, and Paul Krugman’s Substack.