This article originally appeared in the Winter 2024 Edition of the OCD Newsletter.
By Boris Litvin, MA, Matthew Riello, and Andrew Marshall, PhD
OCD and related disorders research rests on the shoulders of giants — scientists and research participants. Through collaboration and trust, they advance knowledge together, so that the 2.3% of the population who have OCD can understand it and access treatment. People volunteer (or receive benefits, like money or free therapy) to provide scientists valuable insights, so we can better understand how OCD and related disorders function, if treatments are effective, and how socioeconomic factors play a role, among other things.
However, two massive issues remain:
1. There are still not enough research participants.
2. There is a gap in diversity and representation.
Low Research Participation & Diversity
Overall, low participation is partly due to lack of awareness about ongoing studies, a communication gap between scientists and the public, and distance from laboratories. Around 80% of social science research also has “WEIRD” participants — White, Educated, and from Industrialized, Rich, and Democratic countries (Henrich, 2020) — yet they make up only about 12% of the world’s population. Similarly, only 25% of participants in clinical drug trials were Black, Asian, or Hispanic in 2020 (Kelsey et al., 2022). In the US and the West, most psychology research participants are White and can afford specialized mental health care; about 70% were American undergraduate students (Henrich, 2020). While the percentage of white college students was 52.3% in 2022, this has steadily decreased from a whopping 83.5% in 1980 (Hanson, 2024).
There is also a dark history of scientific misconduct and injustice, especially for minority groups, that may make them reluctant to participate in research studies. From the Tuskegee syphilis study on African American males (1932-1972) to Nazi experiments on Jewish, LGBTQI+, and Roma Holocaust prisoners (1941-1945), the history of science is scarred by practices that harmed, withheld treatment from, and killed participants. Due to these horrors, formal ethical guidelines for research were created, which are standard practice today. Psychological researchers must adhere to Belmont Report — rules for ethical research with human subjects that include informed consent, assessment of risks and benefits, and participant protections (including minors, prisoners, and people who cannot advocate for themselves) (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Institutional Review Boards (IRBs) and ethics committees exist in all research settings and are required to carefully review every study protocol and ensure safety for all participants. No research study can be done unless it first receives formal approval from an IRB. However, mistrust of the healthcare system is still cited as a major barrier to research participation by African Americans, partly due to past injustices (Corbie-Smith et al., 2002; Scharff et al., 2010). One study showed that Chinese Americans are likely not to trust researchers, and that Hispanic Americans and African Americans cite lack of racial and ethnic equity as participation barriers (Hu et al., 2023).
Researchers are fully aware of these issues and barriers, and have committed to recruiting participants from different ethnic, sexual orientation, and racial backgrounds to better represent the population. The US Congress passed a law requiring the inclusion of women and minoritized individuals in all clinical research. Federal and state agencies that fund most research require all investigators doing studies with human participants to develop and implement strategies for recruiting participant populations that reflect their surrounding community.
What About OCD?
Since the 1980s, there has been a revolution in OCD and related disorders science. All evidence-based treatments and most of our genetic, neuroscientific, psychological, and socioeconomic knowledge were developed within these decades. With everything researchers have come to learn, some people might still wonder, “Why is lack of participation and diversity in research really that much of a problem here?”
Consider this: Women are 1.6 times more likely to experience OCD than men (Fawcett et al., 2020). However, 47 years ago, the US Food and Drug Administration (FDA) instituted a guideline (which has been reversed) to exclude women of childbearing age from early-phase clinical trials. It has only been 31 years since the US Congress passed a law requiring the inclusion of women and minoritized individuals in all clinical research. It has only been eight years since the National Institutes of Health (NIH) made it clear that pre-clinical research should not be limited to males. A survey of American and Canadian OCD clinical trials from 1989 to 2009 showed that 91.5% of participants were White, 1.3% were African American, 1.6% were Asian, and 1% were Hispanic (Williams et al., 2012). We have discovered so much since the 1980s, yet most contributions have come from a very specific population.
Imagine if those FDA and NIH policies had not changed. Imagine if all researchers, clinicians, and policymakers knew about OCD was learned solely from males, who are less likely to experience OCD — on top of the fact that 91.5% of information learned from 20 years’ worth of OCD clinical trials in the US and Canada came from those identifying as White, even though White men make up only about 30% of the US population. The policies that require research to be more diverse are still relatively recent.
It is still common for research to study WEIRD participants — not because it is only relevant to WEIRD people, but because WEIRD people are still easier to recruit. But, what if their non-WEIRD counterparts responded to ERP and SSRIs differently, and to the concept of “therapy” itself differently? A key review by Williams et al. (2017) showed that there are certain similarities — and distinct differences — in OCD presentations worldwide across ethnic, religious, and cultural groups. OCD can be better understood and treated if we know more from everyone who has it.
We encourage researchers to continue widening recruitment and truly understand why some are still hesitant to participate in research. We encourage conducting research in accordance with the different expectations and perceptions that may be held by diverse populations. Funding agencies and policymakers must also provide more resources to make participation easier.
We also encourage people with OCD to participate in research. We recognize that it is not your responsibility alone for research cohorts to be more diverse. Partaking in research should be worth your time and effort. But, you could make a real difference: If researchers better understand your OCD, it will help them better understand someone else’s.
If you do choose to participate, here are some helpful things to know.
What to Expect as a Research Participant: Your Rights and Types of Research
Participant safety is the most valued part of clinical research. It is the researcher’s legal and ethical duty to uphold participants’ rights through the informed consent process. Informed consent is a mandatory component of all medical and psychological research that involves human subjects, requiring that every participant is educated about the study’s nature and what will happen to them (Shah et al., 2023).
The three principles of informed consent are: (1) Participants must know the study’s purpose, benefits, and risks; (2) Participants must be able to consent; and (3) Participants must have the right to revoke consent (Shah et al., 2023). The American Psychological Association’s (APA) Ethics Code expands informed consent to address issues like confidentiality, incentives, and consequences of declining or withdrawing (APA, 2017). All medical and psychological research conforms to these principles, and must be approved and monitored by a human subjects protection committee like an IRB (Grady, 2015).
Research participation is voluntary and anonymous. No one should be bribed, forced, or coerced into joining and/or completing a study. People who are not old enough or need help making their own decisions require approval from a parent or guardian. If you are not 18 years old yet, your participation in research is not only up to a parent/guardian/caregiver — it is up to you, too! If you don’t want to participate, you don’t have to, even if someone else wants you to.
At the start of a study, researchers must inform prospective participants about the basic structure of the study. Participants must read and sign a document that tells them about the study’s purpose, methods, and expected requirements. Participants can withdraw consent from a study at any time if they feel unsafe and/or uncomfortable. Researchers must protect confidentiality — apart from demographic information. Participants’ names, addresses, and other identifiers are never published or disclosed.
Informed consent also makes sure a researcher cannot drastically change a study without the participant knowing, and without obtaining approval from the IRB. This is also important since methods may carry risk of potential harm to participants, such as medication side effects.
OCD research methods can include questionnaires, standardized interviews, blood tests, neuropsychological tests, brain imaging studies, and clinical trials of medications or therapies. Research questions are just as diverse as the methods. Genetic research may examine how certain genes influence OCD’s presentation. Medical research could explore how a patient’s history of infections, such as strep throat, relates to their OCD’s onset and severity. Scrupulosity research may investigate how OCD distorts religious and ethical beliefs. Socioeconomic research may identify cultural and economic barriers to treatment access.
This vast range of methods also means that different studies carry different risks. Since risks should be minimized, all researchers must disclose any possible adverse effects or discomfort to participants in the consent form. Similarly, participants should be made aware of any potential benefits. Whether positive or negative, all participants have the right to know what could happen to their bodies and minds. The only reason a researcher can withhold information is if it poses little or no risk to the participant, and if it could compromise the study’s goal if the participant knew all of the information.
Alongside treatment benefits, studies may provide compensation, such as gift cards, money, and travel coverage. Common consequences of declining or withdrawing from a study include losing access to compensation.
How You Can Get Involved
We hope that our article showed how important your role is for OCD and related disorders research. You can make a real difference and contribute to equitable studies that can result in new knowledge and treatments being more accessible for all.
The IOCDF promotes studies through its “Research Participants Sought” webpage and in the OCD Newsletter, where people can find and apply to studies that interest them. Although many live away from universities and cities, they can participate in many studies online. We also encourage you to visit our website’s resources and blog posts by scientists, and watch the monthly “Research Roundtable” livestream on YouTube. Finally, if you want to contribute to our Research Grant Program and fund cutting-edge science next year, please consider donating through iocdf.org/donate-research/.
About the Authors
Dr. Andrew Marshall
Dr. Andrew Marshall is a developmental cognitive neuroscientist at Children's Hospital Los Angeles. He was diagnosed with OCD in 2011 and now strives to be an effective advocate for those with OCD, highlighted by his continued involvement in IOCDF"s Diversity, Equity, & Inclusion Action Council (https://iocdf.org/dei-action-council/). In his free time, he enjoys spending time with his wife and dog, watching the scariest movies he can find, and cheering on his beloved sports teams (Seattle Mariners, Seattle Kraken, Arsenal FC).
Boris Litvin, MA,
Boris Litvin, MA, is the IOCDF Research Communications Specialist. He coordinates the IOCDF Research Grant Program, Research Symposium, and Poster Sessions, as well as copy-edits the OCD Newsletter.
Matthew Riello
Matthew Riello graduated from the College of New Jersey with a dual BA in history and psychology and a minor in classical studies. He is currently a psychology research assistant at Rider University and the facilitator of the DEIAC’s research subcommittee.
References:
American Psychological Association. (2017). Ethical principles of psychologists and code of conduct. https://www.apa.org/ethics/code
Corbie-Smith, G., Thomas, S B., & St. George, D.M. (2002). Distrust, race, and research. Archives of Internal Medicine, 162(21), 2458-2463. https://doi.org/10.1001/archinte.162.21.2458
Fawcett, E. J., Power, H., & Fawcett, J. M. (2020). Women are at greater risk of OCD than men: A meta-analytic review of OCD prevalence worldwide. The Journal of Clinical Psychiatry, 81(4), 19r13085. https://doi.org/10.4088/JCP.19r13085
Grady, C. (2015). Institutional review boards: Purpose and challenges. Chest, 148(5), 1148-1155. https://doi.org/10.1378/chest.15-0706
Hanson, M. (2024, August 31). College enrollment statistics [2024]: Total + by demographic. Education Data Initiative. https://educationdata.org/college-enrollment-statistics
Henrich, J. (2020). The WEIRDest people in the world: How the West became psychologically peculiar and particularly prosperous. Picador.
Hu, W.T., Bergren, S.M., Dychtwald, D.K., Ma, Y., & Dong, X. (2023). Variations in racial and ethnic groups' trust in researchers associated with willingness to participate in research. Humanities and Social Sciences Communicatons, 10, 466. https://doi.org/10.1057/s41599-023-01960-z
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
Kelsey, M.D., Patrick-Lake, B., Abdulai, R., Broedl, U.C., Brown, A., Cohn, E., Curtis, L.H., Komelasky, C., Mbagwu, M., Mensah, G.A., Mentz, R.J., Nyaku, A., Omokaro, S.O., Sewards, J., Whitlock, K., Zhang, X., & Bloomfield, G.S. (2022). Inclusion and diversity in clinical trials: Actionable steps to drive lasting change. Contemporary Clinical Trials, 116, 106740. https://doi.org/10.1016/j.cct.2022.106740
Scharff, D.P., Mathews, K.J., Jackson, P., Hoffsuemmer, J., Martin, E., & Edwards, D. (2010). More than Tuskegee: understanding mistrust about research participation. Journal of Health Care for the Poor and Underserved, 21(3), 879–897. https://doi.org/10.1353/hpu.0.0323
Shah, P., Thornton, I., Turrin, D., & Hipskind, J.E. (2023). Informed Consent. In: StatPearls [Internet]. StatPearls Publishing. Retrieved September 10, 2024, from https://www.ncbi.nlm.nih.gov/books/NBK430827/
Williams, M. T., Chapman, L. K., Simms, J. V., & Tellawi, G. (2017). Cross-cultural phenomenology of obsessive-compulsive disorder. In J. S. Abramowitz, D. McKay, & E. A. Storch (Eds.), The Wiley handbook of obsessive compulsive disorders (pp. 56–74). Wiley Blackwell. https://doi.org/10.1002/9781118890233.ch4
Williams, M., Powers, M., Yun, Y.G., & Foa, E. (2012). Minority participation in randomized controlled trials for obsessive-compulsive disorder. Journal of Anxiety Disorders, 24(2), 171–177. https://doi.org/10.1016/j.janxdis.2009.11.004
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