Recently, this Reel came across my feed by user @savetimeshan, whose ADHD lifehack content has over 200K followers on TikTok and 57K on Instagram. She makes some pretty big claims about new research on ADHD genes and specifically, using your 23andMe data to find out if you are "at risk" of ADHD.
Shan starts out the video forgiving everyone who ever told her that ADHD isn’t real, because they’re just unaware of “all the new research coming out proving that ADHD is genetic”.
But, does it prove that?
Setting aside the presumption here that biology is the only way for something to be real (a premise I strongly disagree with), let’s take a critical look at these sources.
She includes screenshots of several study headings which go way too fast for anyone to read, but fact-checking is my kink, so I paused the video and looked them all up.
Her first point is about a variant of the DRD4 gene called rs1800497:
Having variants for this genetic marker is associated with having a reduced number of dopamine binding sites and a poorer working memory, and this is just one of countless examples.
She cites this meta-analysis from 2015, which pooled data from 11 studies to see how often rs1800497 was associated with ADHD.
It found “the polymorphism was associated with ADHD in Africans, but not in East Asians, and Caucasians” (which is a great example of how racism still pervades genetic research), with the last sentence concluding that “the rs1800497 locus may be associated with ADHD”.
May be is quite far from proven!
Next up, we have “Low dopamine function in attention deficit/hyperactivity disorder: should genotyping signify early diagnosis in children?”, a paper about the benefits of early genetic testing for predispositions to ADHD and Substance Use Disorder.
Taking a little stroll to the Conflict of Interest section reveals that the second author, Kenneth Blum, “is the owner of and employed by Synaptamine Inc; and owns 100% of stock and all patents issued and pending. He also owns 80% of the stock for Igene LLC; 50% of Impact Genomics, LLC; 10% of Victory Nutrition, LLC; and 25% of Kenber LLC.”
Synaptamine is a company that holds patents for *can you guess* — genetic testing kits! Specifically for “Reward Deficiency Syndrome” which Blum made up himself. The profit motive, it’s so loud, it hurts my ears.
Next, we have “DRD2/ANKK1 Polymorphism Modulates the Effect of Ventral Striatal Activation on Working Memory Performance” which I will admit I do not understand most of, because it’s an extremely technical study and I am not a scientist (please, if you are a genetics researcher, email me, I would love to pick your brain), but what I do understand is that it was funded by the IMAGEN project, which aims to prevent and treat adolescent mental disorders by studying genetics.
I also understand these pharma brands listed in the Conflicts of Interest section: Hexal Pharma, Lilly, Novartis, Shire, Viforpharma, AstraZeneca, Bristol-Myers Squibb, Pfizer, Lundbeck, Wyeth, Teva, and GlaxoSmithKline.
One of the paper’s authors, Tobias Banachewski, is number 5 on the list of ADHD experts worldwide, and a signatory on the International ADHD Consensus Statement, a document that argues for the biomedical model of ADHD and includes a very long Conflict of Interest section full of pharma brands, too!
A rebuttal which you can read here criticized this consensus statement for its unscientific mockery of dissent; psychologist Marino Pérez-Álvarez called it "bulk evidence by accumulation" and "a subtly deceitful argument consisting of citing quantities of studies, without any of them being conclusive, which in the end are taken as convergent, promising support."
The final stop on our fact-checking journey is “Biomarkers for ADHD: the Present and Future Directions” which is a review of studies that show positive evidence for various biomarkers.
Under "Recent Findings" the authors write:
Several biomarkers belonging to electrophysiological, genetic, peripheral, and miRNA-based biomarkers have shown promise in studies to be an objective aid to clinical diagnostic criteria for the diagnosis of ADHD.
Have shown promise is also, not proof!
A huge issue with social media posts (but especially TikToks) that use selected studies to make blanket overgeneralized claims like “we found proof of ADHD genes” is that they present the science as settled when it’s an ongoing debate.
Flash a few screenshots that look official and people don’t question it, especially if it vibes with something we culturally consider to be common sense, like the idea that psychiatric disorders are genetic.
None of these studies say they found definitive proof of ADHD genes. All of them use words like suggests, shows promise, or may be associated, because no definitive biological markers have been found.
Pérez-Álvarez points out that describing ADHD genetics as heterogeneous, complex, and multifactorial act as a sort of linguistic sleight-of-hand:
These expressions sneakily suggest the genetic condition of a disorder by implying a complicated involvement of numerous genes, with no more evidence than thin correlational associations.
To be fair, Shan does emphasize that genetic testing cannot diagnose you with ADHD — which she legally has to say, because no genes have been found to be reliable enough to use for diagnosis.
But wait! Shan has a part two. This one is even more of an ad for 23andMe (which I haven’t even gotten into yet but oh, I will) although there is no ad disclosure (I will say, also for legal reasons) it just very much sounds like one...
She flashes more screenshots of studies, this time in a different configuration, but when you pause the video and compare…THEY’RE THE SAME STUDIES. Then, she advertises a site called GeneticLifehacks.com, which you know we have to Google now.
Here's a screenshot of their landing page:
Note the emphasis on your "unique" genes, the subtle shade on "the masses" (which you are certainly too special to be part of!) and using genetics to "optimize your health, personalized". This is a neoliberal narrative that promotes individuality, competition, and productivity.
Genetic Lifehacks is a website by a blogger called Debbie Moon, who is “combining an engineering mindset with a biological systems approach to ‘hacking’ your health.” Moon says her 23andMe data “ignited a real excitement” in her for genetics, and she used it to figure out which diet and supplements worked best for her.
She promotes “personal responsibility” and “informed choices” for your “individual situation”, and her emphasis on learning your genetics so you can make the right choices for your body are a great example of healthism, a term coined by Robert Crawford to describe a neoliberal ideology that “situates the problem of health and disease at the level of the individual”.
Aubrey Gordon (aka @YrFatFriend) writes in Self:
Crawford saw health as inherently political, a reflection of systems that create and perpetuate poverty, racism, misogyny, and more. But under healthism, health was an individual matter, not a systemic one, which meant that the individual was primarily responsible for their own health.
Personal responsibility and genetic testing are the worst kind of math equation, simultaneously moralizing and essentializing your health. You are your choices and you are your genes. Your health is genetically determined and you choose your own health. Confusing!!
Speaking of essentializing, let's talk about 23andMe for a minute, because it's fucking weird.
Human beings share 99.9% of DNA, so ancestry tests like 23andMe tell you about the .1% of DNA that differs. Race is a social construct, and claims that it’s biological have been used to justify racist violence throughout history.
I find it sort of disturbing that these kits are so popular, because what they do is present the illusion that there is something genetic about race, which is literally the argument of white supremacists everywhere.
This excellent article in Quartz explains just how unscientific and ahistorical these kits are. The way 23andMe determines ancestry is by comparing your genome to “its database of ‘reference genomes’—genomes of people who self-reported their own heritage to the company.”
Self-reporting is not precise or verifiable, and the tests “can’t account for shifts in geopolitics”:
...if you get a report saying that you have 32% Spanish ancestry, the most accurate way to think of that statement is ‘I share some of the known variance in my genome with people who, at some point in history, lived in what is now Spain.
Just as these kits reduce race to biology, so do they reduce the infinite complexity of human personality, behavior and suffering to your genome.
23andMe has been providing “risk assessments” for mental illness for at least a decade. I found this article from 2010 calling bullshit on them, but despite the fact that we have yet to find any genes for any psychiatric label, genetic determinist arguments don’t seem to be going away.
A company is now even claiming they can tell you if you’ll have a bad trip on psychedelics with testing that looks at your serotonin receptor genes. They can’t — trips are extremely subjective experiences, but regardless, these tests create a kind of genomic understanding of the self that can influence our lives and how we live them.
In a critique of behavior geneticist Kathryn Harden’s new book The Genetic Lottery, which (appallingly) argues that genes determine our intelligence and place in society, M.W. Feldman and Jessica Riskin explain how genetic research, objective though it may seem, is laden with bias:
…people are making interpretive decisions at every stage: how to define a phenotype and select people to represent it, how to count these people, which single-nucleotide polymorphisms to consider, how to weight and aggregate them. Interpretive decisions are of course essential to all science, but here there are a great many opinions dressed up in facts’ clothing.
In conclusion, social media is a pseudoscience minefield. Stay skeptical and check those sources! Or, send them to me, I would love to make this into a series.
[If you’re wondering why I am so critical of genetic explanations of ADHD, I wrote about it in-depth here.]
The critiques here are incredibly important. Your newsletter is articulating a lot of the BS that I lost interest in explaining after getting so far in academia as an aspiring psychologist: now recovering from all of this, THIS is the kind of media that I seek and find accurate, and comforting. Biological essentialism has been the death of too many. Community and I are moving beyond the DSM and white supremacy determining outcomes of our health, and continuing to move toward the positive health implications of abolition and community care. This content is a great starting point in leaning into this with ADHD specifically.