Thinking critically about influences on science

By the CHIRON Project Team | Published December 4, 2025

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When a Dataset is Controversial

As an example, the MSSNG database is a large genetic dataset for autism research. It is managed by Autism Speaks, a group that is controversial for its past messaging about “curing” autism.⁶ (Autism Speaks no longer supports this position).

The launch of the MSSNG database was met with criticism from autistic people. People felt that autistic voices were not included in the leadership behind it. Many people also took the name to imply that autistic people are “missing” something.⁷

Researchers who use this kind of dataset should think about how its leadership might shape their studies. A dataset’s design often reflects the goals of the original funder. Even if researchers use the dataset independently, the way it is designed may still guide them toward certain types of questions. In this case, these researchers should ask themselves: does this research address the priorities of autistic people? Or does it contribute to an effort to “find a cure”?

Researchers should learn about any controversies linked to their data. They should understand not only the variables in the dataset, but also the resources and values behind its creation.

More Complicated Than it Seems: Research Funding

Researchers depend on funding to do their work. And funding sources are a traditional disclosure. What is “soft” about research funding? 

How Funding Shapes What We See

Funding sources can also shape how we see an illness or condition. When PTSD was first being studied, it was mainly in research funded by the Veterans Administration and the National Institute of Mental Health in the United States. Because of this, PTSD was seen primarily as a disorder that affected U.S. veterans of the Vietnam War.^8,9

Later, when research funding came from more diverse sources, the understanding of PTSD changed. People began to see that PTSD could affect other groups, such as survivors of sexual violence.⁹ Only recently have studies looked closely at how PTSD affects civilians in war zones.⁸

These early funding sources shaped how PTSD was seen and diagnosed. The lesson for researchers today is to ask, how might my funders shape the way I see my topic? What ideas are taking center stage, and are any being left out? 

Whose Priorities Shape Global Health Research?

Similar questions apply to research that is funded by charitable foundations. A 2009 study found that the Gates Foundation, one of the largest global health funders, mostly gives grants to institutions in the U.S. and the U.K. This is striking because the Foundation focuses on diseases that mainly affect people in the Global South.¹⁰

Critics argue that when funders in the Global North control research about the Global South, research priorities are often biased.^11,12 For example, author Anne-Emanuelle Birn wrote about one of the Gates Foundation’s grant calls. It asked researchers to “Discover New Ways to Achieve Healthy Birth, Growth, and Development.” Birn notes that this is a deeply social issue. But the Gates Foundation identified “molecular pathways” as the main problem, and said nothing about newborns’ or families’ living conditions.¹³

As shown by this example, the priorities of charitable foundations may not align with communities’ priorities. If the foundation had asked these families what problems they were facing, they likely would have heard a different answer. Researchers must think critically about how their funding source might be shaping their work.

Example: a “Soft” Conflict of Interest Statement

A key value that we emphasize in the CHIRON Discussion Kit is transparency, or communicating openly. Being transparent is an important way for researchers to demonstrate that they can be trusted. 

To help with this, researchers should think about including the kinds of influences discussed here in their conflict-of-interest statements. Here is a real-world example of a declaration that goes beyond the typical conflict-of-interest statement:

Excerpted from the paper “The Social Validity of Behavioral Interventions: Seeking Input from Autistic Adults” by Baiden et. al.:

“While none of the authors expects to directly profit from publication of this paper, we aim to be maximally transparent in our potential conflicts of interest as suggested by Bottema-Beutal and colleagues (2021). RKS and KMPB are both certified in Pivotal Response Treatment and have worked as graduate student clinicians at a university autism center that provides PRT. KMPB is also a board certified behavior analyst who provides training at a community agency. PD and ZJW both serve on the ANSWER (autistic researcher) committee of the Autism Intervention Research Network on Physical Health (AIR-P), and ZJW is a member of the family advisory committee of the Autism Speaks Autism Care Network Vanderbilt site. ZJW also serves as a consultant for Roche on multiple projects related to autism intervention and clinical trials.”

In Short

Who funds research—and what their worldview and biases are—can affect:

• What research gets done,
• What kinds of knowledge are created, and
• How entire issues are understood.

Sources and Further Reading

1. Grundy Q, Mayes C, Holloway K, Mazzarello S, Thombs BD, Bero L. Conflict of interest as ethical shorthand: understanding the range and nature of “non-financial conflict of interest” in biomedicine. J Clin Epidemiol. 2020;120:1-7. doi:10.1016/j.jclinepi.2019.12.014 

2. Klitzman R. “Members of the Same Club”: Challenges and Decisions Faced by US IRBs in Identifying and Managing Conflicts of Interest. PLoS ONE. 2011;6(7):e22796. doi:10.1371/journal.pone.0022796

3. Romain PL. Conflicts of interest in research: looking out for number one means keeping the primary interest front and center. Curr Rev Musculoskelet Med. 2015;8(2):122-127. doi:10.1007/s12178-015-9270-2 

4. Bero LA, Grundy Q. Why Having a (Nonfinancial) Interest Is Not a Conflict of Interest. PLOS Biol. 2016;14(12):e2001221. doi:10.1371/journal.pbio.2001221

5. Grundy Q, Mayes C, Holloway K, Mazzarello S, Thombs BD, Bero L. Conflict of interest as ethical shorthand: understanding the range and nature of “non-financial conflict of interest” in biomedicine. J Clin Epidemiol. 2020;120:1-7. doi:10.1016/j.jclinepi.2019.12.014 

6. Saunders P. Neurodivergent Rhetorics: Examining Competing Discourses of Autism Advocacy in the Public Sphere. J Lit Cult Disabil Stud. 2018;12(1):1-17. 

7. Villanueva AG, Majumder MA. Hashtag who’s missing? Lessons for genomic databases. Disabil Health J. 2021;14(1):100945. doi:10.1016/j.dhjo.2020.100945 

8. Abu El-Haj N. Combat Trauma: Imaginaries of War and Citizenship in Post-9/11 America. Verso; 2022. 

9. Deahl M. PTSD: A Short History By Allan V. Horwitz Johns Hopkins University Press. 2018. £21.50 (pb). 256 pp. ISBN: 9781421426396. Br J Psychiatry. 2020;217(2):462-463. doi:10.1192/bjp.2020.96 

10. McCoy D, Kembhavi G, Patel J, Luintel A. The Bill & Melinda Gates Foundation’s grant-making programme for global health. The Lancet. 2009;373(9675):1645-1653. doi:10.1016/S0140-6736(09)60571-7 

11. Charani E, Abimbola S, Pai M, et al. Funders: The missing link in equitable global health research? PLOS Glob Public Health. 2022;2(6):e0000583. doi:10.1371/journal.pgph.0000583 

12. McCoy D, Kembhavi G, Patel J, Luintel A. The Bill & Melinda Gates Foundation’s grant-making programme for global health. The Lancet. 2009;373(9675):1645-1653. doi:10.1016/S0140-6736(09)60571-7 

13. Birn AE. Philanthrocapitalism, past and present: The Rockefeller Foundation, the Gates Foundation, and the setting(s) of the international/global health agenda. Hypothesis. 2014;12(1). doi:10.5779/hypothesis.v12i1.229