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. Author manuscript; available in PMC: 2015 Jan 1.
Published in final edited form as: AJOB Prim Res. 2014 Feb 18;5(1):44–55. doi: 10.1080/21507716.2013.811315

Focusing on Cause or Cure?

Priorities and Stakeholder Presence in Childhood Psychiatry Research

Lauren C Milner 1, Mildred K Cho 2
PMCID: PMC3979560  NIHMSID: NIHMS506860  PMID: 24729931

Abstract

Background

Biomedical research is influenced by many factors, including the involvement of stakeholder groups invested in research outcomes. Stakeholder involvement in research efforts raise questions of justice as their specific interests and motivations play a role in directing research resources that ultimately produce knowledge shaping how different conditions (and affected individuals) are understood and treated by society. This issue is highly relevant to child psychiatry research where diagnostic criteria and treatment strategies are often controversial. Biological similarities and stakeholder differences between attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) provide an opportunity to explore this issue by comparing research foci and stakeholder involvement in these conditions.

Methods

A subset of ADHD and ASD research articles published between 1970-2010 were randomly selected from the PubMed database and coded for research focus, funding source(s), and author-reported conflicts of interest (COIs). Chi-square analyses were performed to identify differences between and within ADHD and ASD research across time.

Results

The proportion of ADHD research dedicated to basic, description, and treatment research was roughly similar and remained stable over time, while ASD research showed a significant increase in basic research over the past decade. Government was the primary research funder for both conditions, but for-profit funders were a notable presence in ADHD research, while joint-funding efforts between non-profit and government funders were a notable presence in ASD research. Lastly, COIs were noted more frequently in ADHD than in ASD research.

Conclusions

Our study shows significant differences in research foci and funding sources between the conditions, and identifies the specific involvement of for-profit and non-profit groups in ADHD and ASD, respectively. Our findings highlight the relationship between stakeholders outside the research community and research trajectories and suggest that examinations of these relationships must be included in broader considerations of biomedical research ethics.

Keywords: autistic spectrum disorder, attention deficit disorder with hyperactivity, quantitative research, social science

INTRODUCTION

Biomedical research is not an isolated process, but a social practice composed of different actors, relationships, and dynamics that combine to advance biomedical knowledge for a medical condition. Particularly influential in these endeavors are groups outside of the research community who invest, and are invested in, research outcomes (i.e., stakeholders) (Caron-Flinterman et al., 2007; Gordan et al. 2011; Hoffmaster 2001; Mitchell et al. 1997). Stakeholders often influence the direction of research advancement through funding and advocacy efforts (Collyar 2008; Landy et al. 2012; Pavitt 2001; Perkmann and Walsh 2009; Sharp and Landy 2010) and by translating research results to broader publics (Pickersgill 2011). Through their actions, stakeholders may play a significant role in shaping accepted knowledge about medical conditions as well as how different conditions (and individuals affected by these conditions) are perceived and treated outside of the research community. The influence of particular stakeholders in different areas of medical research speaks to the issue of justice as the interests of particular groups can direct resources towards specific lines of research that, in turn, influence how different medical conditions are defined and prioritized by the medical community and the broader public, as well as how medical and social service resources are allocated to affected individuals.

Child psychiatry is a field in which different stakeholders may have a considerable impact on research directions informing general knowledge. The etiological and diagnostic complexity, as well as the socially contentious nature, of psychiatric conditions suggests that prioritizing specific types of research will directly influence broader social understanding of these conditions, such as whether a condition is viewed as biologically- or environmentally-based; whether the condition should be treated or prevented; and the extent to which the condition is considered a public health concern (Kawa et al. 2012; Singh and Rose 2009). Prioritization of specific types of research will also directly affect children with these conditions, as general knowledge derived from research findings may strongly influence their concepts of personal identity (Singh 2005; Wisdom et al. 2008) and acceptance or stigmatization by others (Hinshaw and Stier 2008; Martin et al. 2007; Pescosolido et al. 2008, 2010; Schomerus et al. 2012). The exceptional challenges arising from research in child psychiatry warrant a close examination of both research trajectories and research stakeholders in this field.

Attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) provide a unique opportunity to examine and compare research trajectories and stakeholders, as these conditions may benefit from similar research trajectories, but have divergent social histories and unique stakeholder groups that may play a significant role in shaping research differently for each condition. In this study, we compare ADHD and ASD research foci and funding sources over time as one approach to examining the relationship between child psychiatry research trajectories and stakeholder groups that may influence research progress for each condition.

ADHD and ASD: Research Similarities and Stakeholder Differences

Evidence of overlaps in biological, behavioral, and epidemiological aspects of ADHD and ASD (Gargaro et al. 2011; Reiersen 2011) highlight the potential benefits of similar research trajectories for these conditions. In addition to mounting evidence for neurological (Bradshaw et al. 2000; Durston et al. 2009; Takarae et al. 2007) and genetic overlap (Albayrak et al. 2008; Nijmeijer et al. 2010; Ronald and Hoekstra 2011; Rommelse et al. 2010), there is also overlap in symptomatology (Nijmeijer et al. 2009; Ozonoff et al. 1999; Sergeant et al. 2002; St. Pourcain et al. 2011) such that prescribing ADHD medications for attention and impulsivity problems has become common practice for children with ASD (Aman et al. 2008; Canitano and Scandurra 2011; Handen et al. 2000; Zeiner et al. 2011). The biological and behavioral overlap between ADHD and ASD suggests that similar types of research may have tangible benefits on diagnostic and treatment practices for both conditions (Rommelse et al. 2011).

The benefits of similar research trajectories are also suggested by multiple clinical and social characteristics shared by ADHD and ASD. At the individual level, both conditions present in childhood; are disproportionately expressed in males (Baron-Cohen et al. 2011; Ramtekkar et al. 2010); are highly comorbid with other physical and mental health conditions (Kuhlthau et al. 2010; Montalbano and Roccella 2009; Wehmeier et al. 2010); and produce functional impairments that persist long into adulthood (Billstedt et al. 2011; Rosler et al. 2010). At the population level, prevalence rates for both ADHD and ASD have risen dramatically over the past decade (CDC 2009, 2010) and have been a growing focus of public concern. Both ADHD and ASD have been described as “epidemics” or “crises” in pediatric public health (Liu et al. 2010; Newschaffer and Curran 2003; Perrin et al. 2007; van den Hazel et al. 2006) and generated controversies garnering widespread media attention (Barkley 2002; Guillaume et al. 2008; Holton et al. 2012; Timimi et al. 2004). ADHD and ASD are also growing foci within the research community, as evidenced by a five-fold increase in published articles for both conditions over the past two decades (Bishop 2010). Despite increased attention from the research community and public alike, the complexity of etiological factors contributing to ADHD and/or ASD development has prevented facile identification and treatment strategies, making it likely that both will remain medical research priorities for the near future.

Still, the research trajectories are influenced by the dramatic differences ADHD and ASD exhibit in clinical and social aspects, including, but not limited to, condition severity, impact of the condition on physical and/or psychological health, the affected individual’s ability to function successfully in various social environments, and public perceptions of condition etiologies and therapies (McLeod et al. 2007; Mercer et al. 2006). In particular, the different timelines of ADHD and ASD classification as psychiatric conditions (1968 and 1980, respectively) may underlie differences in research trajectories. However, we argue that the availability of pharmaceutical treatment (and involvement of the pharmaceutical industry) for ADHD and the rise of a powerful advocacy movement for ASD stand out as unique social factors that may impact research trajectories for each condition. Because these stakeholder groups have both a clear history of involvement in research efforts and a clear interest in promoting specific types of research, we believe that they in particular may influence ADHD and ASD research progress, and that the presence and priorities of these stakeholders can be observed in the research produced for both conditions over time.

The history of ADHD has been primarily defined by the availability of pharmacological drugs used to treat the condition and controversies resulting from prescribing these drugs to affected children (Diller 1998; Mayes et al. 2009; Neufeld and Foy 2006). Over 30 years before ADHD was officially classified as a mental health condition, Dr. Charles Bradley reported stimulants as an effective treatment to calm “hyperactive” behavior and increase scholastic perform in children (Bradley 1937). The introduction of Ritalin in the 1950s, followed by FDA approval for its use to treat ADHD in 1961, established pharmaceutical treatments as the primary intervention for ADHD (Breggin 2001; Mayes and Rafalovich, 2007). However, the past two decades have been especially contentious because of the sharp rise in ADHD diagnoses and associated growth in consumption of stimulant medications, both in the United States and internationally (Singh 2008). The dramatic growth of stimulant consumption has generated billions of dollars in profit for pharmaceutical companies (Furman 2008; Lang et al. 2010; Scheffler et al. 2007), giving them a pronounced stake in ADHD research. The presence of a powerful stakeholder group with strong financial interests in ADHD remaining a (pharmacologically) treatable condition undoubtedly plays an important role in shaping ADHD research trajectories.

In contrast, the history of ASD has largely been defined by the presence of parent-led advocacy groups promoting research and services for the condition. First described by Leo Kanner in 1943, ASD was initially considered a rare childhood disorder (Deisinger 2011), largely invisible to the research community because of a popular theory that the condition arose from “refrigerator parents” failing to provide adequate affection or making an emotional bond with their children (Bettleheim 1967). The stigmatization of parents of children with ASD prompted the formation of ASD advocacy groups in the 1960s, many of which stressed the possibility of a biological cause of ASD and advocated for more research, support services, and education for the condition (Silverman 2012; Silverman and Brosco 2007). The growing influence of these groups, especially since the late-1990s, has been remarkable. In addition to directly funding research, ASD advocacy groups have also fostered collaborations between different research groups by establishing and controlling ASD databases and tissue banks (Fischbach and Lord 2010; Lajonchere et al. 2010). ASD advocacy groups are also largely responsible for growing public awareness surrounding the condition (Chamak 2008) and remain a driving force behind ASD federal funding efforts (CAA 2005). ASD advocacy groups and other non-profit organizations have quickly become significant contributors to ASD research efforts, and their relationships with the research community continue to flourish, suggesting that the presence of advocacy and non-profit groups will play an important role in shaping ASD research trajectories.

However apparent, the presence of stakeholders in ASD or ADHD research has yet to be systematically examined or compared with research trajectories for either condition. Here, we provide such an examination by comparing research foci (i.e., trajectories) and funding sources (i.e., stakeholders) between a set of randomly selected ADHD and ASD articles over the past four decades.

METHODS

For this study, searches were performed in the PubMed database using database-supplied MeSH terms for ADHD and ASD and limited to every 5th year from January 1, 1970 through December 31, 2010. For each year selected, 10-53% of the total number articles were selected using a random number generator (random.org) and coded for research focus, funding source(s), author-reported conflicts of interest, and country of origin. (See Table 1 for article selection details and Supplementary Table 1 for country of origin details.) Searches were limited to articles written in English. Articles included in this analysis met the following criteria: (1) ADHD or ASD was the primary topic of the article and (2) the article reported the results of an original empirical study.

Table 1. Number of Research Articles Identified and Coded for Literature Analysis of ADHD and ASD Research.

Condition Year Total Articles (n) Articles Sampled (n) Articles Sampled (%)
ADHD 1970 19 10 53
ADHD 1975 82 27 33
ADHD 1980 78 25 32
ADHD 1985 190 57 30
ADHD 1990 227 68 30
ADHD 1995 337 85 25
ADHD 2000 674 135 20
ADHD 2005 1349 202 15
ADHD 2010 2062 207 10
ASD 1970 58 20 34
ASD 1975 109 35 32
ASD 1980 95 30 32
ASD 1985 145 45 31
ASD 1990 184 50 27
ASD 1995 199 50 25
ASD 2000 404 80 20
ASD 2005 853 125 15
ASD 2010 1997 197 10
ADHD 1970-99 933 272 29
ADHD 2000-10 4085 544 13
ASD 1970-99 790 230 29
ASD 2000-10 3254 402 12
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Major article foci were coded as follows: basic (articles reporting neuroscience, genetic, environmental, or other etiological data); description (articles reporting prevalence, diagnosis, behaviors, and comorbidity data); treatment (articles reporting pharmacological or behavioral therapy data); and other (articles reporting outcome or social science data). Funding sources were coded into four main categories: government (federal or state funder); industry (pharmaceutical, biotechnology, or other corporate funder); non-profit (advocacy group or private research foundation funder); and mixed (non-profit or for-profit plus government funder). Conflicts of interest (COIs) were recorded when articles explicated declared an author’s financial involvement with a pharmaceutical or biotechnology organization (or explicitly stated that authors did not have any COIs). All articles were coded by the primary researcher (L.M.) with a second coder sampling 30% of the articles for code reliability. Inter-rater agreement was determined using Cohen’s kappa coefficient.

All analyses were carried out using SPSS® statistical software. Pearson’s chi-square test contingency tables were used to compare proportions of research foci and funding within conditions (across decades) and between conditions (within decades). Fisher’s exact test was used in comparisons where expected frequencies < 5 for a specific cell or when n < 120 for all cells. All statistically significant differences (α= 0.05) observed were followed up with specific pairwise comparisons with a Bonferroni correction (α= 0.05/n comparisons) to determine which foci or funder differences were driving the statistically significant results observed.

RESULTS

A total of 1448 articles (816 ADHD, 632 ASD) were coded by the primary author. A randomly selected subset of articles (n= 450) was independently coded by a second researcher; high interrater reliability was shown for all categories (kappas = .89 [basic]; .86 [description]; .91 [treatment]; .80 [other]). Initial analyses performed between decades detected only two significant differences: a significant increase in the proportion of ADHD articles focusing on description research between 1980 to 1990 (28.0% to 41.8% of sample; χ2 (d.f. =1) = 10.9; p= 0.012) and a significant increase in the proportion of ASD articles focusing on basic research from 2000-2010 (41.9% to 56.8% of sample; χ2 (1) = 8.0; p = 0.046). Because no other significant differences were observed between decades pre- and post-2000, ADHD and ASD articles were grouped into two time periods (1970-1999 and 2000-2010) for subsequent analyses.

Additionally, two significant differences were observed between US-based and international research articles in the 2000-2010 ADHD sample, with US-based articles reporting more treatment-based research than international articles (28.0% of US articles and 19.9% of international articles [χ2 (1) = 19.8; p < 0.001]) and more for-profit funding than international articles (16% of US articles and 7% of international articles; [χ2 (1) = 11.1; p = 0.01]). However, no significant differences were observed between US-based and international articles for ASD or for other research foci or funders for ADHD in the 1970-99 sample. Because the differences observed did not change the overall results reported below, US and international articles were grouped together for each condition in subsequent analyses.

Research Foci

Pearson’s chi-square analyses revealed a significant change in the proportion of ASD research foci between the two time periods examined (χ2 (3) = 15.5; p = 0.001; Supplementary Figure 1). Follow-up analyses showed that this difference was driven entirely by a significant increase in the proportion of basic ASD research across time (from 33.9% in 1970-1999 to 50.2% in 2000-2010; χ2 (1) = 15.8; p < 0.001), with corresponding decreases in proportion of articles dedicated to both description (from 41.0% in 1970-1999 to 31.3% in 2000-2010) and treatment research (from 16.5% in 1970-1999 to 10.9% in 2000-2010). No significant changes in research foci proportions were observed in ADHD articles across time (χ2 (3) = 5.2; p = 0.16).

Significant differences were observed between ADHD and ASD research foci for both 1970-1999 (χ2 (3)= 12.2; p = 0.007) and 2000-2010 (χ2 (3) = 73.9; p < 0.001; Figure 1). In 1970-99, the differences in research foci were driven by the research category of treatment (29.4% of ADHD articles and 16.5% of ASD articles; χ2 (1) = 11.5; p = 0.001). In 2000-2010, the differences in research foci were driven by basic (25.0% of ADHD articles and 50.2% of ASD articles; χ2 (1) = 64.2; p < 0.001); treatment (23.9% of ADHD articles and 10.9% of ASD articles; χ2 (1) = 25.8; p < 0.001); and other categories (13.8% of ADHD articles and 7.5% of ASD articles; χ2 (1) = 9.4; p = 0.002). Overall, differences between the proportions of ADHD and ASD research dedicated to treatment were expected due to the availability of multiple pharmaceutical treatments for ADHD.

Figure 1. Proportion of ADHD and ASD research by focus.

Figure 1

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Percentage of ADHD (light gray bars) and ASD (dark gray bars) articles focusing on Basic (Bc), Description (Dn), Treatment (Tx) or Other (Oth) research during two time periods (1970-1999 and 2000-2010). Error bars indicate 95% confidence intervals calculated for the proportion of articles sampled from total articles identified in the Pubmed database.

This finding was further supported by differences between ADHD and ASD articles with respect to the type of treatment being researched; in ADHD articles, the majority of treatment research was dedicated to pharmaceutical treatments, whereas behavioral treatments comprised the majority of treatment research for ASD (82.6% and 61.1% of treatment research, respectively; χ2 (1) = 75.1; p < 0.001). One unexpected finding was the substantial proportion of basic-focused research in ASD articles over the past decade, especially as compared ADHD articles, which showed research more evenly distributed between basic, description, and treatment research.

Research Funders

Significant differences were also observed in funders of ADHD and ASD research, both between conditions and within conditions across time (Supplementary Figure 2). Initial analyses were driven by significant reductions in “not reported” funders between 1970-1999 and 2000-2010 (from roughly 51% to 23% for both ADHD and ASD articles). For this reason, we performed subsequent analyses using only articles with reported funders. Within these articles, ADHD articles showed significant changes in funders over time (χ2 (3) = 16.4; p =0.001). Follow-up analyses revealed that this difference was driven by a significant reduction in non-profit funders (13.0% in 1970-1999 to 4.6% in 2000-2010; χ2 (1) = 11.5; p = 0.001). Significant changes in funders were not observed over time in the ASD sample (χ2 (3)= 6.4; p =0.1).

Significant differences were also observed between funders of ADHD and ASD research for both 1970-1999 (χ2 (3)= 8.1; p = 0.044) and 2000-2010 (χ2 (3) = 60.7; p < 0.001; Figure 2). In 1970-1999, “mixed” funding groups were cited in more ASD articles than ADHD articles, although this difference did not reach statistical significance. In the period from 2000-2010, multiple differences were observed, with ADHD articles citing significantly more government (65.9% in ADHD and 53.9% in ASD; χ2 (1)= 10.7; p = 0.001) and for-profit funding sources (12.0% in ADHD and 1.3% in ASD; χ2 (1) = 29.7; p < 0.001) than ASD articles, and ASD articles citing significantly more non-profit (4.6% in ADHD and 10.3% in ASD; χ2 (1) = 9.3; p = 0.003) and “mixed’” funding sources (17.5% in ADHD and 34.5% in ASD; χ2 (1) = 27.4; p < 0.001) than ADHD articles.

Figure 2. Proportion of ADHD and ASD research by funder.

Figure 2

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Percentage of ADHD (light gray bars) and ASD (dark gray bars) articles funded by government (Gt), for-profit (Fp), non-profit (Np), mixed (Mx), or not reported (Nr) sources during two time periods (1970-1999 and 2000-2010). Error bars indicate 95% confidence intervals calculated for the proportion of articles sampled from total articles identified in the Pubmed database.

Further examination of the “mixed” funders revealed additional differences between ADHD and ASD articles. “Mixed” funders of ADHD research were composed primarily of government and non-profit sources (72.2%), government and for-profit sources (20.0%), or a combination of all three sources (7.8%). In contrast, “mixed” funders of ASD research were overwhelming composed of government and non-profit sources (92.5%), with few government/for-profit or all three funding sources reported (7.5%). Overall, these differences show that government and for-profit sources primarily fund ADHD research, while non-profit funders primarily fund ASD research, acting as either a sole funder or co-funder (usually with government) of ASD research projects.

To gain a better understanding of research priorities for different types of funders for both conditions, we examined research foci by funder for all articles explicitly noting a funder (1970-2010; Figure 3). In the ADHD sample, government, non-profit and mixed funders exhibited similar research foci by providing the most funding to basic and description research (between 25-35% of funding), followed by treatment (around 20%) and other research (10-20% of funding). As expected, research focus was significantly different in for-profit funded research compared to the other funders (χ2 (3) = 83.5; p < 0.0001), with the majority of for-profit funding focused on treatment (~70%), followed by description research (~20%), and then basic and other research. In ASD research, both government and non-profit funders showed highly similar research foci by funding primarily basic research (~45%), followed by description (~35%), treatment (~15%), and other research (~5%). However, the “mixed” funders showed a notably different funding pattern than government and non-profit funders (χ2 (3)= 20.5; p = 0.002), focusing heavily on basic research (~70%) and less on description (~22%), treatment (6%), or other research (~2%). For-profit research patterns were also unique, but for-profit funding was negligible for ASD articles (total n= 5 articles), so analyses were not performed for this group.

Figure 3. Proportion of ADHD and ASD research focus by research funder.

Figure 3

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Percentage of ADHD (light gray bars) and ASD (dark gray bars) literature samples focusing on Basic (Bc), Description (Dn), Treatment (Tx), or Other (Oth) research focus within each funding source from 1970-2010. Articles not reporting a funding source were excluded from analysis (32% and 33% of ADHD and ASD sample, respectively).

Author-Reported Conflicts of Interest

Lastly, we examined financial conflicts of interest (COIs) declared by the first and last authors from 2000-2010 (before 2000, fewer than 1% of COIs were reported) and found significant differences in both the number of authors reporting COIs (Figure 4) and in the number of COIs reported by authors. From 2000-2010, the majority of ADHD and ASD articles did not report COIs (63.6% and 59.2% of articles, respectively). However, significant differences were still observed; 9.7% of ADHD authors reported one or more COIs, while only 1.6% of ASD authors reported one or more COIs (χ2 (1)= 69.8, p < 0.0001). Additionally, there were differences in the type and number of COIs reported between authors of ADHD and ASD articles. The majority of COIs in ADHD research related to financial relationships with the pharmaceutical industry (e.g., Abott, AstraZeneca, Ortho-McNeil, Shire, etc.), and many authors noted having COIs with multiple pharmaceutical companies (ranging from 1-28 companies). In contrast, the COIs reported in ASD articles related to ownership of either an ASD-related patent or investment in a biotechnology company marketing ASD diagnostic tools, and all authors listed only one COI in ASD research. Finally, as expected, the focus of research differed between articles with author-reported COIs and those declaring no COIs (or articles not reporting COIs) for both ADHD (χ2 (3)= 22.1; p < 0.0001) and ASD (χ2 (3)= 8.1; p = 0.04). While treatment was the primary focus of ADHD and ASD articles with reported COIs (45.8% and 37.5% of articles, respectively), basic and description research were the focus of ADHD and ASD articles not reporting or declaring no COIs (65.2% and 82.2% of articles, respectively). Taken together, these results show that authors with reported COIs are more involved in treatment research than other types of research.

Figure 4. Author-reported COIs in ADHD and ASD research.

Figure 4

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A high percentage of both ADHD and ASD samples did not explicitly report conflicts of interest (n= 64% and 59%, respectively). Error bars indicate 95% confidence intervals calculated for the proportion of articles sampled from total articles identified in the Pubmed database.

DISCUSSION

In general, the results of our analysis draw attention to the shifts in focus and funding for ASD research over the past decade, as well as differences in research trajectories and stakeholders between ADHD and ASD research across time. Although a causal relationship between research focus and research funder cannot be established here, our analysis supports the idea that stakeholder groups outside of the research community have a discernable presence in research production and through this involvement may influence research trajectories. The most apparent differences between ADHD and ASD research trajectories appear in the proportion of basic and treatment research dedicated to each condition. The fact that ADHD research is more evenly-distributed between basic, description, and treatment research, and ASD is focused primarily on basic (i.e., etiological) research may not be surprising. ASD has only recently become a common condition, and there are currently no pharmacological interventions for the core symptoms of ASD. However, a critical examination of research efforts is warranted given that the focus of such efforts play a primary role in shaping what we “know” about these conditions more broadly.

For example, while both ADHD and ASD are considered highly heritable disorders, research efforts to date have failed to find clear genetic, metabolic, or neurological markers highly predictive of either condition (Singh and Rose 2009). Interpretations of this failure differ between conditions. While many argue that the lack of biological markers for ADHD suggest that it is a socially-constructed condition that is used to “medicalize” and pharmacologically control deviant behavior (Conrad 1975 2007; Searight and McLaren 1998; Timimi and Taylor 2004), the lack of biological markers for ASD are attributed to the highly complex biology and dearth of scientific knowledge surrounding ASD (Momeni et al. 2012). Put another way, biological research into ADHD is often cited as evidence of its validity as a psychiatric condition (e.g., “All of the major medical associations and government health agencies recognize ADHD as a genuine disorder because the scientific evidence indicating it is so overwhelming.” [Barkley et al. 2002, 89]). In contrast, biological research into ASD is used an explanation for the condition and an avenue towards better diagnostic methods and treatments (e.g., “There is widespread hope that the discovery of valid biomarkers for autism will both reveal the causes of autism and enable earlier and more targeted methods for diagnosis and intervention.” [Walsh et al. 2011, 603]). Promoting different lines of research may add to these narratives (i.e., ADHD as a contested condition, ASD as a poorly understood condition) by providing a disproportionate amount of “evidence” for particular aspects of the conditions, such as the biological aspects of ASD or the treatment aspects of ADHD. In the end, the types of research produced for ADHD and ASD will help to determine broader social acceptance and treatment of both conditions, as well as dictate how medical and social services resources are allocated for affected individuals, making continued examination of ADHD and ASD research foci warranted.

The results of this analysis also draw attention to the presence of for-profit stakeholders (i.e., pharmaceutical industry) in ADHD research and the presence of non-profit stakeholders in ASD research. The relationship between the pharmaceutical industry and ADHD research (especially in the United States) is clearly observed in this analysis, evidenced both by research funding and by author-reported COIs. Although clear, evidence of this relationship is nothing new. In fact, a sizeable body of literature describes (and often criticizes) this relationship (Angell 2008; Bailey et al. 2011; Campbell et al. 2007) and for good reason; the involvement of industry can significantly bias research. For example, much evidence has shown clinical drug trials are more likely to report favorable outcomes when funded by pharmaceutical companies (Cho and Bero 1996; McHenry and Jureidini 2008; Perkmann and Walsh 2009; Sismondo 2008; Tungaraza and Poole 2007), outcomes which could create imbalanced information that influences prescribing practices for conditions such as ADHD.

Another cause for concern in ADHD is industry sponsorship of advocacy groups. Children and Adults with Attention Deficit Hyperactivity Disorder (CHADD), one of the largest advocacy groups for ADHD, has been criticized for taking donations from the pharmaceutical industry, a conflict of interest that may influence their support of stimulant medications to treat the condition (Timimi 2008). Although CHADD is not directly involved in research funding, this group plays an important role in research by disseminating research findings (for example, see www.help4adhd.org), thus serving as an interface between the research community and the broader public. The complex relationship between the pharmaceutical industry, the research community, and ADHD advocacy groups most certainly influences broader understanding of ADHD as a medically manageable condition, one in which current research is less focused on identifying a cause than on promoting a cure.

Less conspicuous but equally compelling is the relationship between non-profit funders (generally advocacy groups and private foundations), government funders, and basic research for ASD. As previously noted, non-profit stakeholders have become a prominent presence in ASD research. Most apparent in the United States is Autism Speaks, the largest advocacy group for ASD, and the Simons Foundation (SF), a non-profit organization that has contributed hundreds of millions of dollars over the past five years to basic research on ASD (OARC 2012a). Both Autism Speaks and SF contribute to research through large-scale funding initiatives (Silverman and Brosco 2007) and sponsorship of gene (Fischbach and Lord 2010; Lajonchere 2010), tissue (Autism Speaks 2005a), treatment (Autism Speaks 2005b), and cell (SFARI 2010) banks. Non-profit organizations often control access to their databanks, effectively making themselves independent research organizations by maintaining strict control over the type of research being performed using their samples (Andrews 2005; Terry et al. 2007). The results of our analysis, as well as the funding portfolios and resource sharing strategies of these groups, show that they are heavily invested in identifying causal factors for ASD, and their significant financial investments suggest that basic research will remain a (if not the) primary focus of ASD research.

In addition to funding research, non-profit organizations also influence research through their participation in federal funding for ASD. The most compelling example of this collaboration is the Interagency Autism Coordinating Committee (IACC), a committee created to advise federal funding research initiatives and to track the progress of research being funded under the Combat Autism Act (CAA) of 2006, which allocated over one billion dollars to ASD research and services (CAA, 2005). IACC is intentionally collaborative, with representatives from both federal funding agencies and the public, many from autism advocacy and non-profit organizations. To date, IACC reports are consistent with our analysis in that the majority (50-60%) of funding is dedicated to research investigating causal factors of ASD, while social and outcome studies are the smallest focus of funding (OARC et al. 2012b). The heavy emphasis on basic research (especially pertaining to genetic and neuroscience research) was a focus of government-funded ASD research prior to enactment of CAA (Singh et al. 2007, 2009). However, the rise in collaborative efforts between federal research agencies and non-profit organizations observed both in our analysis and elsewhere (e.g., National Database on Autism Research; Lee 2011) suggests that together these stakeholders are the primary actors setting ASD research priorities.

Although progressive, this collaboration is not without controversy. One noted issue is the limited role of the ASD self-advocacy community in research decisions, a community that is overtly critical of the current ASD research agenda (Durbin-Westby 2010; Ne’eman 2010). Unlike government and non-profit stakeholders, self-advocates consistently state that too many resources are focused on finding a “cure” for ASD, something they find unsatisfactory both because most do not consider their condition something that needs to be “cured” (Reynolds 2012) and because it detracts from resources that should be directed towards services for ASD individuals (Robertson 2010). Research and service priorities promoted by the self-advocacy community have yet to become apparent in ASD research trajectories, an issue that may become negligible as the community becomes a more organized and influential research stakeholder group.

A second consideration for ASD research is the potential of for-profit stakeholder involvement in future research efforts. Practically undetectable in our analysis, for-profit stakeholders may become more involved in future ASD research efforts for a number of reasons. First, pharmacological treatments are becoming increasingly common for symptoms associated ASD, such as hyperactivity (Posey et al 2007), anxiousness (Wink et al. 2010), depression (Hurwitz et al. 2012), irritability (Elbe and Lalani 2012), and aggression (Dove et al. 2012). Second, over 150 clinical trials are underway to address ASD core and peripheral symptoms (www.clinicaltrials.gov), suggesting that numerous drug treatments are on the horizon for ASD. The rising prevalence rates and public visibility of ASD suggests that successful pharmacological treatments could be hugely profitable. Drug companies are starting to take note; over the past few years, many pharmaceutical companies have begun to develop drugs that target ASD and have taken a larger role in sponsoring clinical trials (Hughes 2010).

Additionally, the novel nature of many of these therapies will necessitate large-scale clinical trials, prompting significant changes in ASD research foci and increased visibility of for-profit groups in ASD research efforts. Whether the rise of a for-profit presence in ASD research will spark controversy over using pharmacological treatments in children (as it has for ADHD research) remains to be seen, but the impact that this type of stakeholder has on ASD research should remain under intense scrutiny as more pharmacological treatment options become available.

Our study has a number of limitations, including analyses influenced by limitations inherent in our selection of database (PubMed), articles, and coding strategies. A comparison of ADHD and ASD literature in PubMed, Web of Science, and Ovid databases showed similar article numbers across time (data not shown). However, limitations in PubMed classifications of ADHD and ASD search terms (i.e., PubMed “MeSH” terms) or in the number of articles sampled (10-53% of the literature reported) may have influenced our findings. The sample was randomly selected to maximize the probability that it was representative of the literature produced, but was limited to research published and indexed in PubMed, and thus may be subject to publication bias (Dickersin et al. 1987; Easterbrook et al. 1991). Additionally, there is evidence that industry-sponsored studies are less likely to be published than research funded by other sources (Lexchin 2003), making it possible that our study underestimates industry-sponsored research for both ADHD and ASD.

Finally, it is important to recognize the limitations inherent in any examinations of social influences on research within a context as complex as that of child psychiatry research. We chose to examine the association between research foci and research funders because the data are easily accessible and quantifiable. However, as noted in the introduction, the diagnostic history of each condition, as well as many other condition-specific factors, may have a significant impact on research trajectories. Future studies should attempt to identify and study additional condition-specific aspects that impact research in this field.

Despite these limitations, our results reveal clear differences in research foci over time (research trajectories) and funding sources (research stakeholders) between ADHD and ASD. Our analysis suggests the involvement and interests of stakeholder groups outside of the research community may play an important role in shaping research directions for these conditions, which may result in broader social and ethical consequences. Continued examination of the motivations and contributions of these groups toward research endeavors will be critical to foster a more comprehensive understanding of the broader context in which child psychiatry research advances as well as to make informed decisions about how to direct research efforts in the future.

Supplementary Material

Supplementary Figure 1
Supplementary Figure 2
Supplementary Table 1

Acknowledgments

The authors would like to thank Catherine Nygen for assisting in analysis and David Magnus, Sally Tobin, Inna Shafer and Nanibaa’ Garrison for helpful comments on the manuscript.

Funding: This work is sponsored by a grant from NHGRI (P50 HG003389).

Footnotes

Author Contributions: LCM provided the conception and design of the study, collected and analyzed the data, and drafted the manuscript. MKC contributed significantly to the conception and design of the study and edited the manuscript.

Competing Interests: None declared.

Ethical Approval: Not required.

Contributor Information

Lauren C. Milner, Center for the Integration of Research on Genetics and Ethics (CIRGE), Stanford Center for Biomedical Ethics, Stanford University, 1215 Welch Road, Modular A, Stanford, CA 94305.

Mildred K. Cho, Center for the Integration of Research on Genetics and Ethics (CIRGE), Stanford Center for Biomedical Ethics, Stanford University, 1215 Welch Road, Modular A, Stanford, CA 94305, Tel: (650) 725-7993, micho@stanford.edu.

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Supplementary Materials

Supplementary Figure 1
NIHMS506860-supplement-Supplementary_Figure_1.doc (88KB, doc)
Supplementary Figure 2
NIHMS506860-supplement-Supplementary_Figure_2.doc (91.5KB, doc)
Supplementary Table 1
NIHMS506860-supplement-Supplementary_Table_1.doc (34KB, doc)

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