Nearly Everything We’ve Been Told About Genes and Autism is Wrong

By Toby Rogers

[…]

Herbert (2013) confirms the criticisms of genetic theories of causation, specifically as they pertain to autism. She writes, “evidence is shifting the conception of autism from a genetically determined, static, lifelong brain encephalopathy to a multiply determined dynamic systems disturbance with chronic impacts on both brain and body” (p. 129).

Later, she recognizes environmental theories of causation:

Documentation of brain inflammation and immune activation in autism changed the playing field because it became clear that we were not dealing with healthy tissue that was wired differently but rather with brains that were having health problems with their cells… (p. 136).

She continues:

Given the clinical observations of transient improvement, persistent remission or recovery, and response to metabolic intervention, it becomes necessary to ask whether the brain in autism is truly and intrinsically “defective” or is instead “obstructed,” at least in many cases…(p. 139).

Herbert (2013) portrays the field of genetics as blinds mentioned earlier, the basic principles of these therapies include tackling subcomponents of “the autism” as problems that can be solved and thereby reducing the stress on the whole system so that it has more of a chance to recalibrate ed by their own hubris. She makes the case that given alarmingly high (and rising) autism rates, “anything we can do sooner rather than later to stem the tide ought to make eminent public health sense” (Herbert, 2013, p. 144). And she argues, “Clearly, gene myths are a problem in autism and are among the forces putting obstacles in the way of implementing a full-force public health campaign to reduce environmental risks” (Herbert, 2013, pp. 145-146).

Herbert (2013) also hints at the need for a sort of medicine from below. She writes:

The taboos around some of the alternative treatments used by parents have stopped many professionals cold from even familiarizing themselves with the methods and rationales of these approaches. Over time, as success stories have accumulated of children (and even some adults) greatly reducing the severity of their problems and sometimes even losing their diagnoses, some serious scientific attention has begun to be paid to these phenomena…(p. 145).

If, as Herbert suggests, parents, not doctors, are at the leading edge of researching treatments, that would seem to open up a whole host of questions about epistemology and the current state of science and medicine. The epistemological hierarchy set up by mainstream science and medicine has medical specialists above doctors who are above parents. But is it possible that in the case of autism, this hierarchy has it backwards? Furthermore, if, as Herbert argues, the observations and intuitions of parents produce better treatment outcomes, might they also be right about the causes of autism?

VIII. The Political Economy of Genetic Research

So if monogenic explanations for disease are not consistent with the scientific evidence of how most diseases work, then why do biotech companies, popular media, and the CDC continue to promote the search for such explanations?

Clearly, the model underlying the promise of genetic engineering is overly simplistic. But what makes the situation even more problematic is that DNA sequences, once isolated or synthesized, as well as the cells, organs, or organisms into which they are inserted, can be patented and thereby become forms of intellectual property. The science and the business of genetic engineering have become one, and efforts at basic understanding compete with the pursuit of profits. The usual professional rivalries are enhanced by major financial rivalries, and the complete interlinking of government, universities, and industry leaves hardly any disinterested scientists who are devoid of conflicts of interest and can be trusted to evaluate and critique proposed scientific models or their practical implementation without raising suspicions of pursuing financial interests. As the biotechnology industry expands its reach, the health hazards and environmental pollution it produces are added to those chemistry and physics bequeathed us during the twentieth century…(Hubbard, 2013, p. 25).

[…]

Genetic and genomic research is driven not so much by Merton’s idealized search for scientific knowledge nor even by traditional capitalist forces of supply and demand for products that meet a need in society. Rather, genetics and genomics exist through a unique combination of government funding created by biotech lobbying for that funding and speculative investment that is trading more on hope and hype than evidence of effective treatments (Gruber, 2013, p. 100). The total market capitalization of the top 25 biotechnology (which includes genetics and genomics) companies was $990.89 billion in 2014, $1.225 trillion in 2015, and $1.047 trillion in 2016 (Philippis, 2016). The US spends more than any other nation on genetics research (35% of the world total); one-third of the total comes from government and two-thirds from private investment (Pohlhaus and Cook-Deegan, 2008).

The Biotechnology Innovation Organization (BIO) is the primary trade association for the genetics and genomics industry. BIO was formed in 1993 as the result of the merger of two smaller biotechnology industry associations (Sourcewatch, n.d.). Its more than 1,100 members include both genetics and genomics firms in addition to a wide range of pharmaceutical, agricultural, and medical companies that employ 1.6 million people in the US (BIO, 1993). From 2007 to 2016, BIO spent an average of $8 million a year on lobbying (Sourcewatch, n.d.). It has been remarkably successful at lobbying the US government for funding, regulatory rules, and tax provisions that benefit member companies. 

For example, from 1993 to 2014 the budget of the NIH increased from $10 billion to over $30 billion. In 2016 the NIH budget was $32.6 billion of which $8.265 billion was devoted to genetic and genomic research which includes the categories Genetics, Gene Therapy, Gene Therapy Clinical Trials, and Genetic Testing (U.S. DHHS, 2016). But this underestimates the total spent on genetic research because there is also genetic research happening within other disease categories in the NIH budget. BIO secured $1 billion in tax credits for biotech companies in the 2011 federal health-care legislation (Gruber, 2013, p. 277). BIO routinely pushes the FDA for faster approval times for medical interventions (Weisman, 2012).

Gruber (2013) notes that many academics and university science departments have grown wealthy through their ties with biotech firms. “Universities should be places where healthy skepticism of claims about science and its applications are pursued. But more than almost any other high-technology business, the biotechnology industry maintains extremely close ties with leading academic institutions…” (Gruber, 2013, p. 277).

Public funding for genetic research persists in spite of the fact that it is a less promising approach than mitigating environmental or lifestyle factors. “Given the many complex interactions that underlie almost all human diseases, even improving existing approaches to identifying and modifying genetic risk factors will often have significantly less value than modifying non-genetic risk factors” (Gruber, 2013, p. 280). But again, addressing environmental or lifestyle factors — doing less of the things that cause harm — is generally not profitable. Because US elected officials and regulators are captured by corporate interests, Congress funds genetic research to the exclusion of more promising (but less profitable) pathways.

Like Herbert (2013), Gruber (2013) sees the misplaced focus on genetics as crowding out more promising research while producing little improvement in public health. “The promise of genomics may have provided policy makers with a simple narrative of basic health research investment, but it has led to poor decision making on their part and has proved to be an insufficient standard bearer in the fight to improve the human condition” (Gruber, 2013, p. 282).

[…]

Latham and Wilson (2010) have the sharpest political economy critique of all:

Politicians like genetic determinism as a theory of disease because it substantially reduces their responsibility for people’s ill-health….Corporations like genetic determinism, again because it shifts blame….Medical researchers are also partial to genetic determinism. They have noticed that whenever they focus on genetic causation, they can raise research dollars with relative ease….Recognizing their value, these groups have tended to elevate genetic explanations for disease to the status of unquestioned scientific facts, thus making their dominance of official discussions of health and disease seem natural and logical. This same mindset is accurately reflected in the media where even strong environmental links to disease often receive little attention, while speculative genetic associations can be front page news. It is astonishing to think that all this has occurred in spite of the reality that genes for common diseases were essentially hypothetical entities.

As it relates to autism, what started out looking like the epitome of cutting edge science in the race to understand a disease, starts to look like a distortion of science and a distraction from more promising research pathways driven by financial interests rather than concern for public health.

IX. Conclusion

In the 1990s and 2000s government and industry had a theory of the case — that genes are responsible for disease — that has now been largely refuted. In the meantime an entire industry and public health infrastructure was built around this idea. So when the underlying theory was discredited, proponents simply modified the theory (to the search for the “missing dark matter”) so that the industry could keep going and continue to receive government funding. When this evolving research agenda produces profitable corporations and well-paid scientists but little to nothing that reduces human suffering it is an enormous problem for society.

The fact remains that Gilbert and Miller (2009), Landrigan, Lambertini, and Birnbaum (2012), the American College of Obstetricians and Gynecologists (2013), and Bennett et al. (2016) have all concluded that autism and other neurodevelopment disorders are likely caused by environmental triggers and are thus preventable through law and policy. Even if sophisticated genetic and genomic research is able to find ways to reduce symptoms and severity, it is still going to be orders of magnitude more cost-effective (not to mention more ethical) to prevent autism in the first place by keeping toxic chemicals out of children’s bodies.

Currently, genetic research is soaking up the vast majority of autism research funding and preventing more effective prevention strategies from emerging. This appears to be a reflection of the political power of biotech firms to shape the research agenda to serve their interests rather than a reflection of best practices in science or the best interests of society.

[…]

Via https://brownstone.org/articles/nearly-everything-that-weve-been-told-about-genes-and-autism-is-wrong/