Why We Should Stop Looking for ADHD Genes
Genetic determinism will never liberate us.
“ADHD runs in families,” this WebMD article confidently states. “There are genetic characteristics that seem to be passed down.”
“Some research suggests genes are the largest factors in determining who develops ADHD. After all, genes are the building blocks for our bodies,” says this one from Healthline.
These are your first-page Google results for “ADHD genetic” — but these sites are also massive companies that get most of their funding from pharmaceutical industry dollars, and both have been criticized for shady editorial practices in the past.
What’s so bad about genetics? Isn’t it just a fact that genes determine who we are? The medical system would like for you to think so; the entire biomedical model of mental illness rests on genetic determinism, and while doctors love to present themselves as unbiased, there’s a political reason for this focus on genes.
The US government spends millions of dollars every year on genetics research. The National Human Genome Research Institute has requested $633 million dollars from Congress for 2022, an increase of $17 million from their 2021 budget.
The 2022 budget request cites the need “for genomics to inform the development of solutions for some of the greatest public health needs that the nation faces related to common diseases”, citing heart disease and autism as examples.
Autistic advocates loudly oppose genomic research. This September, the $4 million dollar Spectrum 10K project led by Simon Baron-Cohen was put on hold after fierce backlash from the autistic community, who are skeptical of its intentions and rightfully pissed that research like this continues without autistic input.
Beneath the emphasis on genetic research lies the ideology of biological essentialism, which has been used throughout history to support all kinds of racist, genocidal, and eugenic policies. The goal of finding “solutions for some of the greatest public health needs” implies that public health has nothing to do with social context and is entirely determined by biology.
But genes do not determine anything — they “define possibilities” as neurophysiologist Ruth Bleier said, and they are shaped by the environment where they develop. This makes studying genes difficult, because environments for all groups in an experiment have to be exactly the same — the slightest difference can trigger huge variations in the way a gene develops.
Robert Sapolsky uses the “warrior gene” to explain this in his book, Behave. It’s an MAO variant associated with aggression, a pop science favorite that was widely reported in mainstream media, and a defense in prior court cases. But what nobody mentions is the fact that it’s only associated with violent behavior when a person has a history of severe childhood abuse.
The DRD4 gene has been associated with ADHD (although not all studies have found such a link), but again, environmental effects are often overlooked. DRD4 has at least ten different variants, and the one most studied in regards to ADHD is 7R, which is said to affect novelty-seeking and impulsivity.
Sapolksy writes:
“..kids with the 7R variant are less generous than average. But only if they show insecure attachment to their parents. Secure-attachment 7Rs show more generosity than average. Thus 7R has something to do with generosity — but its effect is entirely context dependent…7Rs are worse at gratification-postponement, but only if they grew up poor.” [italics mine]
Despite WebMD’s claim that poverty does not cause ADHD, it actually has a huge effect on the development of genes and cognition. Sapolsky continues, “..genes are nearly irrelevant to cognitive development if you’re growing up in awful poverty — poverty’s adverse effects trump the genetics.”
The powerful do not want to talk about this aspect of genetics, though, because it would require admitting that inequality has far more adverse health effects than biology, and that true solutions for our biggest public health crises would involve treating socioeconomic injustice.
“The working class stress social conditions because they need them to change, and the capitalist class stress biology to justify their resistance to change,” Susan Rosenthal writes.
In an article titled “Is ADHD Genetic? Yes and No.” on my least favorite website, ADDitude Mag, Dr. Larry Silver does briefly mention what he calls the “controversial theory” that social context shapes human behavior, but in the end, he concludes that “while environmental and cultural factors can alter behavior and child development, research confirms that ADHD is primarily a biologically-based disorder.”
Every behavior is biologically-based, but that doesn’t mean it’s biologically-determined, or that biologically-targeted solutions are the best way to address them.
“Capitalism needs biological determinism. The claim that human maladies are genetic lets the system off the hook,” Rosenthal explains, “The claim that inequality, poverty, crime, and war are rooted in genetics makes them seem normal and natural. The claim that ‘attention deficit hyperactivity disorder’ is genetic shifts attention from overcrowded, underfunded, public schools.”
In 2013, a study found that “98% of all variation in educational attainment is accounted for by factors other than a person’s simple genetic makeup,” yet this was not mentioned in the title, abstract, or press release. Instead, they emphasized (and widely reported) that “three gene variants each contribute just 0.02% to variation in educational attainment.”
Their recommendation? More genetic research, which makes sense, because geneticists only receive funding to study genes, and the government is happy to fund them.
“Running” in the Family
Genetic determinists point to two different kinds of proof for ADHD genes: high heritability rates in families and twin studies.
The first is easy to debunk: just because something runs in the family does not necessarily mean it’s genetic, because families share environments. As psychologist Jay Joseph explains in ADHD and Genetics: A Consensus Reconsidered, family studies are unable to disentangle the two.
Adoption studies are then held up as further proof, but these are also flawed. Adopted kids in these studies had higher rates of ADHD and were compared to ADHD kids who live with their biological parents. The catch is that these studies did not have access to the biological parents of the adopted kids, so none could say whether their biological parents had ADHD or not.
Joseph explains how ADHD experts like Stephen Faraone and Russell Barkley take the results of these studies and write about them deceptively:
“…in a subsequent review article in which he discussed ADHD adoption research, Faraone wrote, ‘By examining both the adoptive and biological relatives of ill probands, one can disentangle genetic and environmental sources of familial transmission.’
…However, no ADHD adoption study has examined the ‘adoptive and biological relatives’ of the same ‘ill’ adoptees. Authoritative ADHD experts such as Barkley then write for a larger audience in technically accurate, yet potentially misleading ways: ‘Cantwell…and Morisson and Stewart…both reported higher rates of hyperactivity in the biological parents of hyperactive children than in the adoptive parents of such children.’”
But Barkley isn’t comparing the bio parents and adoptive parents of the same child, he’s talking about different study groups. What he also fails to mention is that, because adoptive parents are screened for mental illness before they are allowed to adopt, “they are — by definition — a group in which we would expect to find fewer psychiatric disorders than in the general population,” Joseph writes.
The second kind of genetic “proof” is the twin study. There are two kinds: monozygotic (MZ) or identical twins, who share 100% of genes, and dizygotic (DZ) or fraternal twins, who share 50% on average. Theoretically, if identical twins have ADHD at a higher rate than fraternal (which studies have found they do), then ADHD is genetic.
The problem with this is the fact that identical twins have also been shown to share more environmental aspects than fraternal.
They “spend more time together, more often have the same friends, are treated more similarly by parents and others, and so forth” and even experience something called “identity confusion” where they “view themselves as being two halves of the same whole”. We’re back to the issue of being unable to pull nature and nurture apart.
Joseph writes:
“..even if a gene is associated with ADHD, it still doesn’t mean that the gene contributes to its causation. For example, there is a strong correlation between having a Y chromosome and being the chief executive officer (CEO) of a Fortune 500 corporation. Yet, this does not mean that having a Y chromosome causes or predisposes someone to become a CEO.”
Psychologist Marino Pérez-Álvarez goes further:
“Of the four ways of inheritance, genetic, epigenetic, behavioral, and cultural, genetic is probably the least expectable in transmitting ADHD-type behavioral traits. It is not among the functions of genes to generate behavioral traits…The genome mediates adaptation and response to the environment; it does not cause response and adaptive action.”
He cites physicist Evelyn Fox Keller, who has argued that we need to shift our conception of genes from a static code to a reactive system shaped by interactions:
“What research in genomics has shown is that biology itself is constituted by those interactions, and is so constituted at every level, even at the level of genetics. Indeed, one might say that what makes a molecule — any molecule — biological is precisely its capacity to sense and react to its environment.”
Learning From History
When I see an emphasis on genetics in ADHD, my mind traces the roots of the biomedical model back through its horrible history, and it perplexes me that such ideas have become so commonplace in the age of neuroscience that most people don’t see any red flags.
“As a contemporary German psychiatric genetic researcher observed, ‘doctors and scientists involved in the crimes of the Nazi period…would undoubtedly have welcomed the technical possibilities of present-day genetics,’” Joseph writes.
Eugenics discussions inevitably point to Nazis, but the Nazis actually cited the 1927 US law Buck v Bell to defend their eugenics policy in 1933. American doctors had been forcibly sterilizing poor, disabled people for over two decades before that, as Anne Harrington recounts in her book Mind Fixers.
The American Journal of Psychiatry published arguments in favor of euthanizing disabled children in 1942 (yes, mid-Holocaust). Eugenics is not just a Nazi thing, it’s an American thing.
This isn’t even distant history, either. In 1992, the head of the National Institute of Mental Health announced the Violence Initiative, which planned to research a genetic cause for violence in inner city Black neighborhoods and find a pharmaceutical treatment that could “cure” it.
The program was shut down because of outrage from critical psychiatrists and activists, but it was not the end of this kind of racist research, and I see its echoes still.
In a recent article on what he’s calling “Deficient Emotional Self-Regulation”, Barkley brings up the comorbidity of Oppositional Defiant Disorder and ADHD:
“Given ADHD’s prevalence in ODD, we can assume that the emotional component of ODD arises biologically from ADHD. That is, ADHD likely creates one of the two dimensions involved in ODD…This framework helps us understand why emotion and ODD are managed so well by ADHD medication..”
What he doesn’t mention is that ODD is a heavily racialized diagnosis most likely to be placed on low-income Black and Latino youth.
There are no medications approved to treat ODD, so these comments make a lot of sense in the context of expanding pharmaceutical markets, and considering the racist aspects of ODD and the staggering number of years poor children under 6 labelled with behavioral disorders are prescribed multiple neuroleptic drugs, the innocent surface of this paragraph about “treatment” starts to give way to a disturbing underbelly.
Another ADDitude article that advises providers on equitable ADHD care does discuss the fact that children of color are less likely to receive an ADHD diagnosis, but systemic racism and socioeconomic inequality are treated like unfortunate and inevitable realities, and the solution provided is “early and adequate intervention” in childrens’ lives.
“Given what we know about the school-to-prison pipeline, could it be that ADHD, which can affect school behavior, increases the odds of incarceration for African American youth and adults?”
High rates of ADHD diagnoses in the prison population are listed in a passive way that informs but does not question, suggesting that the problem is not the racist practice of mass incarceration, but the fact that the incarcerated’s ADHD was not treated in time to keep them out of jail. These are bioessentialist messages that blame individuals for systemic violence.
David Edward Walker traces the history of behavioral genetics and racist psychology to the mass labelling of Native American children as “feebleminded” and the horrors of the boarding school era, remarking that this oppression has now “moved inside the bodies of this generation’s children as they line up to receive their stimulant medication from the school nurse.”
Challenging the biological tenets of the medical establishment will get you branded insane — the oldest tactic for squashing dissent in psychiatry’s book. Russell Barkley and friends put out an International Consensus Statement on ADHD that compared dissenters to flat-earthers or doubters of gravity, “social critics and fringe doctors whose political agenda would have you and the public believe there is no real disorder here.”
I do have a political agenda, as do doctors and researchers — Barkley is a libertarian who loves Ayn Rand, so bioessentialist arguments that blame individual dysfunction slot nicely into his own politics. It’s also worth mentioning that the Consensus Statement’s Financial Disclosures section is stuffed to the brim with pharmaceutical brand names.
To act like medical professionals are apolitical is dishonest, and to call critics of the medical system crazy is quite a convenient way to professionally avoid critique. (Barkley also called the journalist Alan Schwarz, who wrote ADHD Nation, a Scientologist, another common tactic for shutting down dissent, to which Schwarz replied, “I am as much a Scientologist as I am a grapefruit.”)
I’m not saying there’s no disability here — I experience what’s labelled ADHD, I was diagnosed with it as a teenager, and I know how distressing it can be. I also understand why the biomedical model comforts people who want an easy answer for their suffering, but bioessentialism, validating though it may seem at first, is ultimately an insidious trap.
Barkley & Co.’s International Consensus Statement did not go unopposed, but I have never seen anyone cite the rebuttal that thirty-four researchers wrote in response. I’m not sure most people even know that it exists, but its message is important:
“Not only is it completely counter to the spirit and practice of science to cease questioning the validity of ADHD as proposed by the consensus statement, there is an ethical and moral responsibility to do so. History teaches us again and again that one generation’s most cherished therapeutic ideas and practices, especially when applied on the powerless, are repudiated by the next, but not without leaving countless victims in their wake.”
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