Tag Archives: politics

by | September 3, 2025 · 2:27 PM

Why SRY? World Athletics Decides Who Is Female

About a year ago, I wrote a DNA Exchange piece about the history of how the International Olympic Committee, the governing body of the Olympic Games, decided who could or could not compete as a female. It’s not a pretty history. On July 30th of this year, the saga continued as another sports organization, World Athletics*, the governing body of international track and field and related events, issued new guidelines for anyone who wants to compete as a female in international competitions. The guidelines took effect on September 1, 2025.

It’s not pretty either.

Per the guidelines, Eligibility Rule 3.5.1: In these Rules, ‘biological male’ means someone with a Y chromosome and ‘biological female’ means someone with no Y chromosome, irrespective of their legal sex and/or gender identity.

Per Regulation 3.5.4: An Athlete must demonstrate their eligibility to compete in the female category by means of SRY testing (sex-determining region Y gene analysis) of an Athlete’s buccal cells (i.e., cheek swab testing) or blood sample.
a. If the SRY test is negative, the Athlete will be permitted to compete in the female category.
b. If the SRY test is positive, the Athlete will not be permitted to compete in the female category pending further medical assessment by World Athletics.
c. An Athlete who fails to undergo SRY testing as requested by World Athletics will not be eligible to compete in the female category.

Apparently, World Athletics views SRY as the business part of the Y chromosome and therefore is equivalent to having a Y chromosome. This policy makes a geneticist wince – a chromosome is not equivalent to a single gene and a single gene does not a chromosome make.

Technically, per Regulation 3.5.5, athletes who World Athletics rules are biological males can compete in the female category. However, they can compete only if the event is not a World Rankings Competition, their results are not counted for world records, and their results would be listed separately. Not exactly an enticement to compete.

SRY testing is just one way to categorize sex. There are many ways to categorize biological sex in humans besides presence or absence of SRY – anatomy, hormonal levels, karyotype, gamete size, and the many genes linked to the development of primary and secondary sexual characteristics. When all these align, there is usually little controversy as to whether someone is a typical biological male or a typical biological female. However, as geneticists and other concerned medical professionals know all too well, the criteria often do not align. Choosing any one criterion to decide who is male or who is female will inevitably fall short.

For the uninitiated, SRY is a gene located on the Y chromosome that produces a protein called sex-determining region Y protein that can influence the embryonic development of testes and ultimately testosterone production. Testosterone levels are strongly linked to some forms of athletic performance. Often – but not always – individuals who have a functional SRY gene develop typical male primary and secondary sexual characteristics. In a simpler world, anyone born with an SRY gene would be a biological male and anyone born without an SRY gene would be a biological female. But it is unfortunate and inaccurate to call the protein “sex-determining.” The real world is complicated, not simple. Multiple genetic and non-genetic factors influence your biological sex.

For example, there are some individuals have a 46,XY karyotype and positive SRY test and who you would say were female if you saw them walking down the street or naked in the gym dressing room. Some of these individuals have an intact SRY gene but have a DNA variant in the SRY gene that produces a reduced- or non-functioning protein product. Some of these individuals have an intact SRY gene with no functional variants but have DNA variants in other genes involved in the development of sexual characteristics, such as the MAP3K1, DHH, and NR5A1 genes. Some have no true Y chromosome but have a small portion of a Y chromosome containing the SRY region translocated to another chromosome, usually an X chromosome. Some SRY positive individuals have no apparent genetic explanation for the discrepancy between predicted and observed phenotype.

There are also individuals who have a 46,XX karyotype and a negative SRY test and who you would say were males if you saw them walking down the street or naked in the gym dressing room (though some of these individuals may have external genitalia that are not clearly typical male or female). There are even, rarely, 46,XX SRY positive fertile females.

An accompanying FAQ to the guidelines states that the organization will contribute $100 to each athlete towards the cost of the SRY test. I don’t know what labs will charge, but this sounds like a reasonable amount to me. However, athletes may need to travel significant distances to obtain a test to allow for chain of custody. This could be a burden in countries where such labs are not widely available. The test is highly accurate for the presence or absence of the SRY gene when the lab is highly experienced and capable, but currently there is no single centralized laboratory or approved list of labs performing the test for World Athletics, and thus there is no quality control. This may become a problem if testing is performed in many different labs around the world, especially where labs have insufficient experience with SRY testing or have a history of cheating scandals when performing lab tests, such as has been reported with testing for performance enhancing substances.

In a misstep sure to sink the hearts of genetic counselors everywhere, World Athletics guidelines recommend post-test counseling and guidance but unfortunately the organization is silent on pre-test counseling. Incidentally, item 7 on the FAQ sheet refers to “the Y gene,” once again conflating genes and chromosomes. Also, I am not sure why the sample requirements are only buccal swabs or blood samples. A saliva sample should work just as well for SRY testing as a buccal swab and is easier to reliably obtain. Perhaps World Athletics is also conflating buccal swabs and saliva samples? Someone should tell them we’ve updated appropriate samples for genetic testing since the days of Barr body testing.

Athletes who are SRY positive may choose to undergo further evaluation if they want to challenge the result. Athletes who choose to have further evaluation and are found to have Complete Androgen Insensitivity Syndrome (CAIS) can compete as females under certain conditions. But Item 10 on the FAQ indicates that athletes who have DSD conditions other than CAIS will be ineligible to compete as a female: If the SRY test and the subsequent medical assessment confirm that the athlete has a 46XY DSD condition then, unless the athlete has an established 46XY condition called Complete Androgen Insensitivity (CAIS), this athlete is ineligible to compete in the female category in a world ranking competition. In other words, only females with one specific type of DSD can be eligible to compete. This is important because individuals with differences in sex development are generally over-represented in female athletics.

The regulations in other sports governing organizations for determining who is allowed to compete as a female do not always include SRY gene testing. For example, in the United States, the Women’s National Basketball Association (WNBA) and the National Women’s Soccer League (WNSL) do not use SRY testing to determine eligibility to complete in their leagues (for a sport-by-sport listing of female eligibility, see this listing by the Women’s Sports Policy Working Group). The International Olympic Committee has no specific guidelines of their for who can compete as a female. Instead, they leave it to the governing bodies of each sport to determine their own criteria. Thus SRY positive females could compete in some Olympic events but not in others, depending upon the guidelines of the governing body of their particular sport.

The World Athletics guidelines appear to be specifically for individuals with differences in sex development rather than targeting transgender women. World Athletics has separate guidelines for transgender women that basically do not allow a transgender athlete to compete as a female if they have undergone male puberty. But probably many transgender women are SRY positive, so requiring an SRY test would just serve as a further block transgender women from competing as females.

Determining who is eligible for competition as a female is important to maintain fairness in elite level sporting events that rely on power, strength, speed, and endurance, where elite male athletes significantly outperform elite female athletes. If biological males are allowed to compete as females in elite competitions, it could result in fewer SRY negative women competing and winning in international athletics competitions and subsequently earning less income from endorsements.

So what is to be done? It’s clear that separating humans into males and females is biologically complicated and loaded with psychological, personal, religious. and cultural biases. Still, it seems reasonable to develop scientifically based criteria that are as fair as possible to all athletes, recognizing that total elimination of unfairness is likely impossible. These criteria should be consistent across all sports where performance differences between sexes is well documented and the result of biology rather than from cultural practices that limit the opportunities for females to compete in sports. As a start, let me suggest some points that all sports governing bodies should consider:

  1. Support research into the various genetic, environmental, hormonal, and developmental factors that affect SRY gene expression and incorporate the results of that research into eligibility criteria.
  2. Support research into the genetic, environmental, hormonal, and developmental factors that affect both sports performance and the development of primary and secondary sexual characteristics, and incorporate the results of that research into eligibility criteria.
  3. Include qualified genetics professionals as part of the committee(s) that evaluate and choose criteria for determining sex. If nothing else, geneticists can remind them of the distinction between genes and chromosomes.
  4. Allow athletes whose sex is in question to undergo a complete array of biological and genetic evaluation beyond a single test such as SRY, with clear criteria for the role of each test alone and in combination in determining eligibility to compete as a female. SRY is perhaps better thought of as a screening test rather than a diagnostic test for sex. Although even a larger battery of evaluations will still result in some athletes falling into a gray zone, it will be fairer and more scientifically based.
  5. The World Athletics regulations pretty much ban all athletes with DSD from competing, unless they have CAIS. This paints these complex situations with a broad brush. Each form of DSD needs to be evaluated in its own right in terms of eligibility criteria.
  6. Criteria should be guided by fairness to all athletes, and free of political, social, and personal biases and influences. Every athlete deserves to be treated with respect, compassion, dignity, and fairness.
  7. Athletes must, must, must have pre-test counseling by a qualified genetics professional or other medical professional with relevant expertise before any testing is performed. Learning that you have a previously unknown difference in sexual development can have major life-altering implications for one’s sense of self, sexual identity, reproductive future, and potential health problems associated with some DSD conditions. Some individuals may choose to withdraw from competition until such time as they are emotionally ready to undergo genetic evaluation. And I am talking about counseling, not just information provision.
  8. Evaluating criteria should be an ongoing process that takes into account the latest advances in genetics, biology, and medicine.
  9. If other genes unrelated to biological sex are ever found to have a significant impact on athletic performance, will these then be incorporated into athletes’ eligibility to compete? Should it result in the creation of competition categories based on genetic profile and not sex?

Maybe the biggest roadblock to implementing better criteria are the explicit and implicit biases, prejudices, and political ideologies that everyone brings to the table. It will be important to hear all viewpoints with an open mind and with the best interests of athletes as the guiding light.

  • – World Athletics was formed in 1913 when it was known as the International Amateur Athletic Federation (IAAF). In 2001, it changed its name to the International Association of Athletics Federations. The organization’s name was changed to World Athletics in 2019. In a narrow sense, athletics refers to various running sports, track and field, and race-walking.

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by | May 6, 2025 · 12:48 PM

Eugenics and American Fertility: Now and Then

The trump administration seems to think America has a birth rate that is too low. Basically, the idea is that in this country you just can’t have enough babies born to White middle and upper middle income married couples. Proposed pronatalist measures for increasing the birth rate, many of which are likely to be championed by the trump administration, stand out for their foolishness, ineptitude, and ignorance of human behavior. As a genetic counselor, they are particularly egregious to me because of their origins of in early 20th century eugenics. Not in a vague and general way. No, you can pretty much draw a straight line between now and then, even if trump et al. might deny such a connection. Which, perhaps, they may not.

Many of polices being considered are straight out of the pages of classic eugenic texts; the only difference is the font. Limiting immigration from “undesirable” countries. Portraying immigrants as criminals, social and economic parasites, and taking away jobs from Americans. A National Medal of Motherhood for mothers with 6 or more children echoes the Nazi’s Ehrenkreuz der Deutschen Mutter (Cross of Honor of the German Mother) for mothers of 4, 6, or 8 children (corresponding to bronze, silver, and gold medals). Far-fetched to link trump policies to Nazis you say? Well, j.d. vance and marco rubio have expressed strong support for the German far right Alternative für Deutschland (AfD) political party. Motherhood medals have also been promoted by Jospeh Stalin and Vladimir Putin. You would be keeping good company there, mr. president.

Cross of Honour of the German Mother
(Ehrenkreuz der Deutschen Mutter) Source: https://en.wikipedia.org/wiki/Cross_of_Honour_of_the_German_Mother

Financial and social incentives to induce families to have more children are another set of supposedly fertility-increasing policies with eugenic origins. Baby bonuses, prioritizing transit funding for areas with higher birth rates, tax breaks for families with more children, increased parental leave, and greater financial support for child care may all seem on the surface to be compassionate and supportive of parents and could be endorsed regardless of political ideology. Some version of these policies were also floated by eugenic proponents in the first half of the 20th century.

But underlying these economic policies is a deep sense of White Fear of being replaced by Undesirables. trump defines a family as married heterosexual parents. In 2022, ~ 70% of births occurred outside of marriage among Blacks, 68% among Native Americans, ~53% among Hispanics, ~52% among Hawaiian/Pacific Islanders, and ~27% among Whites (most commonly among lower income White women). These policies would also de facto exclude single parents and LGBQT+ people. This ticks all the boxes on the list of people deemed genetically inferior by eugenicists. Effectively the policies would primarily benefit middle and upper middle income White parents in heterosexual marriages, with a preference for the wife staying at home to raise the children (Not too many husbands would be expected to stay at home to raise all those children; that’s the wife’s job.). Charles Davenport and Harry Laughlin, respectively the director and superintendent of the Eugenics Record Office, would give their blessings to these policies.

A historic precedent that illustrates the contradictions and biases inherent in these economic incentives are found in the history of minimum wage laws. What, you say? Minimum wage laws? What do they have to do with eugenics? And even if these laws have their faults, aren’t they better than no laws at all? Here I base my discussion primarily on a book and an article by the economist T.C. Leonard.

To be clear, non-eugenic factors were involved in establishing minimum wages. But eugenically-minded economists played a critical role in establishing these policies and putting them into practice. Many of America’s leading economists in early 20th century were also strong advocates of eugenics. Edward Ross, an economist at Stanford University* and the University of Wisconsin-Madison, was a proponent of the Race Suicide Theory and strongly opposed immigration, especially from Asia. Harvard economist Irving Fisher** served as president of the Eugenics Research Association, helped found the Race Betterment Foundation, and was on the advisory board of the Eugenics Record Office. Simon Patten, an economist at the Wharton School*** who served as President of the American Economic Association, supported eugenics and “eradication of the vicious and inefficient.”

Source: http://www.eugenicsarchive.org/html/eugenics/static/images/1439.html

For these economists, eugenics was seen as a way to economically support the (White Anglo-Saxon) American worker. They felt that American workers’ jobs and family sizes were threatened by low wages. If workers couldn’t make enough money, they would not be able to support large White families. In the economists’ view, the source of low wages was competition from people who were willing to work for the lowest wages possible (I guess no one thought it conceivable that employers would voluntarily pay workers a decent wage).

Who were these people threatening the American work force and family? Immigrants were one group, primarily people not of Anglo-Saxon ancestry, in much the same way that trump has argued that “illegal immigrants” steal jobs from Americans. These anti-immigrant advocates despised all non-Anglo-saxon races more or less equally, at a time when race was defined differently and included the Italian Race, the Slavic Race, the Chinese Race, the Irish Race, etc. William Z. Ripley, professor of economics at MIT and Columbia University, was the author of The Races of Europe: A Sociological Study, a book that argued that race explained human behavioral and psychological traits, partly the result of heredity and partly the result of cultural upbringing. It was felt that these undesirable immigrants were “racially predisposed” to accepting low wages and living in sub-standard conditions.

Political cartoon from ~1920. Source: https://www.posterazzi.com/anti-immigration-cartoon-of-shows-disembarking-immigrants-heading-for-the-american-cities-as-an-army-of-unemployed-americans-watch-ca-1920-history-item-varevchisl017ec105/

But it was not only immigrants that worried the economists. They also fretted about women (who were supposed to stay at home and raise families rather than compete for jobs), children (these economists tended to support mandatory childhood education and child labor laws because these laws kept kids off the job market and competing with adults), the “shiftless”, the poor, African-Americans, and the “feeble-minded.” If low paying jobs paid at least a living wage supposedly guaranteed by minimum wage laws, then White Anglo-Saxon workers would be willing to accept these jobs and go on to have large families. And if lower paying jobs were filled by White workers, then the “undesirables” would be unemployed and less likely to have larger families or to even migrate to America at all. Voila! America would be saved!! Or so the reasoning went. Spoiler alert: it didn’t really work, despite legislative success. By 1923, 15 states and the District of Columbia had passed minimum wage laws. The federal Fair Labor Standards Act of 1938 established a minimum wage of 25 cents an hour.

Anti-immigration cartoon by W.A. Rogers from 1888. Source: https://www.posterazzi.com/anti-immigrant-cartoon-nimported-duty-free-american-cartoon-by-w-a-rogers-1888-attacking-big-business-for-hiring-immigrants-to-keep-wages-low-and-as-strike-breakers-poster-print-by-granger-collection-item-vargrc0066631/

How one defines a liberal, a conservative, a progressive, a eugenicist, or a critic of eugenics changes over the course of history. Many of these economists were considered Progressives and liberals but none of them would remind you of Paul Krugman, Bernie Sanders, Alexandria Ocasio-Cortez, or Elizabeth Warren. Minimum wage laws, while still controversial but for different reasons, no longer carry eugenic connotations. A number of prominent geneticists who were strong critics of eugenics, such as Ronald Fisher, Herman Muller, and Lancelot Hogben, also strongly supported policies that today we would label eugenic because they called for policies to encourage reproduction among “the most fit.”

Eugenic ideology never really died, even if no society ever died off because of over-breeding by the genetically unfit. Like a zombie, it keeps coming back to haunt us in different forms, separating the world into the genetically superior and the undeserving genetically inferior. Sometimes eugenics comes under the guise of maleficence with intent to harm and sometimes under the guise of beneficence with intent to help society. But whatever its form, it never does any good.

____________________________________________________

*- Stanford had an intimate history with eugenics from its founding. Besides Ross, Leland Stanford, Jr., Stanford’s founder, and David Starr Jordan, Stanford’s first president, along with several faculty members up through the 1960s, were ardent eugenics advocates.

** – In a weird historical echo of eugenics and phony-baloney medical beliefs that evoke Secretary of Health and Human Services Robert F. Kennedy, Jr., Fisher’s daughter was treated for schizophrenia by the psychiatrist Henry Cotton, who believed that the cause of schizophrenia was bacterially infected tissue in bodily recesses. Cotton “treated” schizophrenia through various surgical procedures including dental extraction, colectomy, hysterectomy, oophorectomy, cholesytecomy, gastrectomy, and orchiectomy. Fisher’s daughter underwent a partial bowel resection and died of complications from the surgery, one of Cotton’s many unfortunate victims. RFK, Jr., may not exactly be a eugenicist, but his attitudes toward autistic people sure smacks of it. Please, no one let RFK, Jr., know about Cotton’s ideas.

***- In another historical irony, trump earned an economics degree from the Wharton School in 1968.

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by | April 2, 2025 · 7:37 PM

The Genetic Basis For Guidance of The Better America Breeding Initiative to Enhance Society (BABIES): A (Very) White Paper

Authors: Contract employees of the newly-created NIH Division of Genomic Efficiency (NIH-DOGE), the cost-effective replacement NIH Institute for the now defunct National Human Genome Research Institute (NHGRI). The mission of NIH-DOGE is to improve America’s genetic health.

NOTE: This is a satire. I added this disclaimer after I wrote the first draft of this post because, well, it sounded like it could be true.

Introduction and Rationale

America is in a genetic crisis. There are far too many undesirables having far too many babies and voting for Democrats. This represents an extreme threat to the social, economic, religious, and political fabric of our democracy country. Therefore, we propose a program – not to be confused with eugenics – which encourages reproduction among those who can provide the best genetic stock for future generations of Americans. This program is called Better America Breeding Initiative to Enhance Society. This title was chosen because it is consistent with Make America Healthy Again and the like, but also because the acronym is BABIES, and how could anyone oppose a program with such a cute name?

Methods

We utilized the latest techniques of whole genome analysis, including long read sequencing, ancestry analysis, and the indispensable and non-controversial polygenic risk scores to analyze a cross-section of the US population to identify those who should be encouraged to produce the greatest number of offspring within their Christian-sanctioned (limited to certain sects) marriage only.

Exclusion Criteria

Consistent with recent anti-DEI presidential Executive Orders, the following groups were excluded from participation: 

  1. Anyone of The Fairer Sex, also known as females
  2. Anyone claiming to be a sex or gender other than male. It goes without saying that anyone with the prefix trans-  in front of their gender are to be excluded. 
  3. Anyone claiming to be victimized, minoritized, oppressed, or descendants of so-called slaves
  4. Immigrants, documented or otherwise
  5. Anyone who has engaged in sexual activity with members of the same sex. Or anyone who is thought to have engaged in such sexual activity (let’s face it, some people look really gay or lesbian but won’t admit it)
  6. Anyone whose ancestry is not from Northern/Western Europe or a country that places unfair tariffs on American goods. Exceptions can be made for anyone who has made really large donations to support acceptable Republican candidate
  7. Anyone who voted for a Democrat
  8. Anyone who does not attend a Christian church
  9. Canadians illegally residing in the US
  10. Low-income people who are too lazy to work and are leeching off government programs like Medicaid, Medicare, and SNAP
  11. Anyone who has received an mRNA vaccine
  12. Anyone else we decide we don’t want

Results

After applying exclusion criteria, we were left with one participant who met our criteria and who we liked, some guy who lives in, surprisingly, the liberal bastion of San Francisco. We can’t explain this except sometimes that’s how the genetic lottery works.

Even though there was only one participant in our study, we do not believe that this imposes significant limits on generalizability. Secretary of Health and Human Services Kennedy, who is well known for his rigorous scientific mind, agrees with us and states that our program goals are consistent with Make America Healthy Again and therefore should be published.

We will not release the name of the subject, though his Social Security Number and other personal information is available upon request if you ask anyone who works for the other DOGE. Or for a fee.

The subject’s genomic analysis revealed that he carries a few pathogenic variants with the potential to produce serious clinical conditions throughout the lifespan. However, we feel that he has other genetic traits that make him an Ideal Reproducer. For example, his polygenic risk scores showed the genetic potential for an IQ score nearly 7 points above the population mean and a kinda’ low risk for schizophrenia. He has a good sperm count. Most critically, his ancestry analysis indicated 99% inheritance from Scandinavia, Germany, and the good parts of the UK. We don’t think his 1% African-American inheritance should be counted against him. We are open-minded and don’t give credence to the racist One Drop Rule.

Discussion

Anyone whose genetic and social profile matches the Ideal Reproducer should be encouraged to have as many children as possible with their wives, including tax breaks, generous baby bonuses so the wife does not have to be employed, a nice house, and the latest model Tesla. For reproductive purposes, their prospective wives should undergo similar rigorous genetic testing to make sure they are genetically well-matched. Such genetic testing will be free for prospective spouses if they are also identified as Ideal Reproducers. The married couples should also be given full and free access to any Assisted Reproductive Technology, such as IVF, to ensure they fulfill their reproductive potential.

Identifying Ideal Reproducers will increase the number of Productive Americans who will make positive economic and social contribution to society. Combining the BABIES Program with the Avoiding Undesirable Reproduction in America (AURA) Initiative. The AURA Initiative geometrically increases the tax rate of Undesirable Reproducers proportional to the number of children they have. In addition, we recommend that Congress should pass the Access To Genetic Counselors Act, which makes genetic counselors approved Medicare providers, as long as all genetic counselors only participate in the BABIES program to identify Ideal Reproducers. BABIES and AURA together will save America taxpayers trillions of dollars in the next 5 years, eliminate government waste, balance the budget, and allow even more tax breaks for the ultra-wealthy.

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by | March 17, 2025 · 2:28 PM

Potential Implications of The Trump Administration Policies For Genetic Counseling – Part 2: The Impact On Patients

Last week in Part 1 I looked at the potential impact of Trump’s policies on genetic counselors. Here I speculate about their impact on patients. As in my last posting, my analysis is not complete and, so far, mostly speculative because the effects of the policies are only beginning to be felt and Trump flip-flops so frequently that it’s hard to know how permanent they will be.

When that storm comes
Don’t run for cover
Don’t run from the comin’ storm

– Lyrics from “Storm Comin’ ” by Ruth Moody and released in 2011 by The Wailin’ Jennys*

I have often said that every genetic counselor and medical geneticist I have ever met would march into Hell for their patients and take on The Devil himself. Well, welcome to Hades. As bad as Trump’s policies are for genetic counselors and the larger medical, scientific, and research communities, patients are likely to fare far worse. Genetic counselors for the most part “only” have to worry about their jobs. Patients have to worry about their jobs, losing access to healthcare, reproductive healthcare, supplemental income, disease management, and life-saving treatment. As is the unfortunate par for the course, vulnerable populations will suffer the most – women, the poor, people living in rural areas, the elderly, documented and undocumented migrants, children, people with disabilities, LGBQT+ people, non-White people, and disabled veterans. The inhumanity of this is beyond comprehension.

Impact On Access To Health Insurance, Health Care, Social Service and Education

The proposed cutbacks to Medicaid, and perhaps Medicare too, will have the biggest immediate impact on the greatest number of people, particularly those who we see in genetics clinics. Cuts to Medicaid – Congress is proposing a $880 billion cut – would affect ~79,000,000 people. Medicaid also covers about 40% of US births. Medicare provides health insurance coverage for people over 65 and people with certain disabilities, covering about 66 million people. These cuts can reduce patient access to medical care, long term care, community and home-based support services that allow people with disabilities to live and work independently or semi-independently, and resources that help people with disabilities find employment. Another ~7,250,000 children are enrolled in the Children’s Health Insurance Program (CHIP), a low-cost health insurance program for children from families that are poor but but not poor enough to qualify for Medicaid. Overall, nearly half of the enrollees in Medicaid and CHIP combined are children. So children with disabilities or genetic conditions on Medicaid or CHIP may not be coming to your clinics anymore. These cuts can also work at cross-purposes. In states that did not participate in the Medicaid Expansion program, hospitals’ uncompensated medical costs (i.e., charity care) were significantly higher compared to states that took advantage of the expansion.

The claim that there are billions of dollars of Medicaid/Medicare fraud and waste committed by enrollees is blatantly false. The vast majority of fraud is committed by providers, not patients. And work-requirements for Medicaid recipients are laughable and only feed into the myth of a large body of “undeserving poor.” 65% of people on Medicaid work but typically in jobs with low salaries and no health benefits. Those who don’t work do so because they are disabled or ill, are attending school, or are caregivers. The work requirement implemented in Georgia a few years ago resulted in the majority of Medicaid money funneled toward covering administrative costs for the work requirement program rather than needed services for enrollees. If you are serious about saving significant amounts of money in the Medicaid program, go after the providers and the state administrators, not the recipients.

Source: https://ccf.georgetown.edu/2025/01/27/the-truth-about-waste-and-abuse-in-medicaid/

The Department of Education has lost nearly half its work force since Trump took office, with the most recent firings on March 11. Further funding and personnel cuts are likely in the near future, with possible elimination of the department altogether. The Department of Education’s Office of Special Education Programs funds grants to states that then distribute the funds to local school districts. In 2023, this amounted to $18.4 billion in aid. Many children with developmental disabilities rely on state-funded educational intervention programs to help them achieve their full potential.

Immigrants, documented and undocumented, may lose access to Medicaid due to funding cuts and anti-immigration bias. About 50% of undocumented immigrants and about 1 in 5 lawfully resident immigrants lack employer-sponsored health insurance even if they are employed. Not only do they face restrictions and barriers to accessing government-sponsored health insurance, they may not even want to seek health care out of fear of being deported. Oh, for those who say they don’t want their tax dollars going to insure immigrants, in 2023 undocumented immigrants paid about 90 billion dollars in local, state, and Federal taxes. And, if they are legally employed, they pay into Medicare but are not usually eligible to receive Medicare benefits.

LGBQT+ people, who make up about 7-8% of the US population, are less likely to seek medical care. They are also more likely to report chronic health conditions or disabilities compared to non-LGBQT+ people. About 1 in 5 are on Medicaid, so cuts to Medicaid would affect a significant portion of this population. Transgender people in particular are being targeted by the Trump administration. These policies wind up discouraging them from seeking medical care, which is especially concerning given the ongoing medical needs related to being transgender and their higher rate of mental health diagnoses.

Intersex people, who are commonly seen in genetics clinics, have a unique set of health problems and have a high frequency of mental health problems. Trump’s policy of defining sex as either male or female will negatively affect people whose biological makeup does not conform to a binary sex distinction, a distinction based on a total lack of understanding of basic human or animal biology. Intersex people also typically have lower incomes and are more likely to be on government-supported health care.

Why the need to persecute people who are gay or transgender or whoever isn’t cis-heteronormative? Can’t you just let people try to lead their lives and loves in peace and good health, and leave them alone already? Life is hard enough as it is.

From a practical political standpoint, it’s difficult to understand how these moves will help Republicans win votes in future elections at the state and federal levels. Medicaid and Medicare covers over 100 million people of voting age, and another tens of millions of voting age adults are LGBQT+, for a total of well over 100 million voting age adults. In the 2024 election, 155 million people voted altogether. If these groups united behind a presidential candidate who promised not only to restore but expand those benefits, the candidate would win in a true landslide (unlike the landslide victory that Trump keeps claiming, which was actually one of the smaller victory margins since the 19th century). But people often do not vote in their own best interests or just don’t vote at all so it’s hard to know how this will play out in the ballot box.

Impact On Reproductive Healthcare

“I said, ‘Well, I’m going to do it, whether the women like it or not,’” Trump said. “I’m going to protect them.”

The situation is just as dire for access to reproductive health care. As noted above, Medicaid covers about 40% of births in the United States overall, increasing to about 50% of births in rural areas. Medicaid cuts will likely further the closure of hospitals in rural areas, where hospitals depend more on Medicaid funds than in large metropolitan areas. This means that there will be loss of obstetric services in poorer rural areas (and other medical and mental health services too), so women will have to travel further to deliver their babies. Loss of childbirth coverage will likely result in more health problems for mothers and babies, and further contribute to US neonatal and maternal death rates, which is among the highest in the world. The maternal mortality rate is particularly high among Blacks; about 65% of Black women are covered by Medicaid.

Trump takes credit for overturning Roe v. Wade, a ruling which has led to extensive abortion bans around the country. It seems likely that the extent and number of bans will increase over the next few years, backed by support from Mordor The White House. But the administration’s policies extend beyond abortion to birth control and research about maternal health outcomes. Executive Order 14182 signed on January 28 rescinded two of Biden’s Executive Orders, the consequences of which include:

•Dismantling the Interagency Task Force on Reproductive Healthcare Access, which had been established to ensure a whole-of-government response to the crisis

•Stopping 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

•Halting agency efforts to enforce anti-discrimination law in response to reports of people being denied emergency abortion care and prescription medication

•Stopping federal agency efforts to ensure individuals receive emergency abortion care as guaranteed by law

•Ceasing efforts to advance abortion access for patients enrolled in Medicaid who must travel for abortion care

•Stopping public education and awareness efforts about access to reproductive health care, including informing people about how to obtain birth control;

•Blocking data collection, research, and analysis in measuring the effect of access to reproductive health care on maternal health outcomes and other health outcomes.

They may as well have put The Taliban in charge of women’s reproductive health care policy.

On its face, Trump’s Executive Order increasing access to IVF appears to be a win for reproductive healthcare since many private insurers provide minimal or no coverage for this service. However, the order only recommends that “Within 90 days of the date of this order, the Assistant to the President for Domestic Policy shall submit to the President a list of policy recommendations on protecting IVF access and aggressively reducing out-of-pocket and health plan costs for IVF treatment.” It lays out no concrete strategy for raising the funds to cover this expansion or forcing insurers to cover it, and makes no mention of coverage for other assisted reproductive technologies (ART). More critically, the Executive Order may wind up limiting access to IVF. Vince Haley, who is the Assistant to the President for Domestic Policy and responsible for creating the recommendations, is a former assistant to Newt Gingrich, a speechwriter for Trump under the supervision of Stephen Miller, who is virulently anti-LBGQT+ and anti-immigrant. Hence Haley’s policy recommendations will likely exclude LGBQT+ people and unmarried heterosexual people from having access to IVF. I wouldn’t be surprised if the policies also exclude immigrants, given Haley’s connection to Stephen Miller, the administration’s emphasis on pronatalist policies, and Trump’s allusions to “white replacement theory.”

Robert F. Kennedy, Jr., the head of the Department of Health and Human Services, has made a career of spreading lies, inaccurate claims, and misinformation about vaccines. His anti-vaccination stance could result in fewer women and chlldren getting the MMR vaccination or the varicella vaccination if they are infection-naive adults. This could in turn lead to an increase in the incidence of congenital rubella syndrome and congenital varicella syndrome. If a mother acquires measles during pregnancy, it could lead to serious consequences including death, pneumonia, miscarriages, stillbirth, prematurity, and low birth weight. And cod liver oil, Kennedy’s preferred treatment for measles, contains high levels of vitamin A, a potent human teratogen.

Impact On Income

Proposed cuts to Social Security could have dire consequences for people with disabilities and their families. Social Security Disability Insurance (SSDI) provides supplemental income to adults and children with disabilities. It is the only federal financial program for this group, and serves only the lowest income families whose children have conditions such as Down syndrome, cerebral palsy, autism, intellectual disability, and blindness. Families receive about $800 a month on average. The families are so poor that even shaving a few dollars off that amount could have profound effects. These cuts are being proposed by the world’s richest man who sells trucks that cost at least $100,000 each and gets free advertising at the White House. Yeah, he’s tuned in to the needs of low income families and people with disabilities.

This image has an empty alt attribute; its file name is image-7.png
Cartoon by RJ Matson, editorial cartoonist at Roll Call, a newspaper covering Congress and Capitol Hill. Source: The Contrarian https://contrarian.substack.com

Impact From Limitations And Cuts To Clinical and Genetic Counseling Research

Funding and personnel cuts at the NIH would be another blow to the care of genetic counselors’ patients. The NIH, and particularly the National Human Genome Research Institute (NHGRI), are key sources of clinical and other research programs focusing on hereditary disorders. In particular, it specializes in people with rare disorders and serve as a resource for the families and their healthcare providers who have nowhere else to turn to. NIH and NHGRI helped establish and maintain the Undiagnosed Diseases Program, which is instrumental in providing diagnoses and care recommendations for people who have been seeking a diagnosis in vain, sometimes for decades. Most of the stunning advances in the treatment and care recommendations for rare genetic diseases are based on research performed at this Institute.

Patients would also be negatively affected by the loss of NIH-funded genetic counseling research that examines the pychological, familial and medical impact of diagnosis, treatment, and management of genetic conditions on patients and their families. The value of cutting edge clinical research would be blunted in the absence of the best way to implement discoveries into the lives of patients so they can get maximal benefit. Any cuts to NHGRI would be keenly felt by patients with genetic conditions.

We cannot be lulled into a sense of powerlessness and inevitability about these policies. We can’t only rant and rave. We need some radical optimism. We need to fight back tooth and nail in small and big ways. We need to encourage our patients and colleagues, at least those who are not vulnerable and deeply threatened by the political climate, to let their government representatives know in no uncertain terms that these policies are unacceptable and that their political futures hinge on sane and compassionate policies. We need our professional organizations – NSGC, ACMG, ASHG – to start collecting data in an organized and coordinated fashion to document specific situations and cases where the policies have negatively affected patient care and the practice of medical genetics and genetic counseling and broadcast it far and wide. Let’s put Hell back where it belongs.

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  • – For some reason, these days I am favoring Canadian musicians. Lots of time listening to the Wailin’ Jennys, Joni Mitchell, Leonard Cohen, Kate and Anna McGarrigle, Rufus Wainright (son of Kate McGarrigle), Neil Young, Alanis Morisette, Drake…. I could go on but I don’t want to sound too Tragically Hip. You can take Joni’s line from Big Yellow Taxi and apply it to democracy “Don’t it always seem to go that you don’t know what you’ve got ’til it’s gone?”

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