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The BELONG researchers have acknowledged these concerns head-on. Regarding potentially reinforcing biological determinism, Grice explained, “We’re not thinking there will be different genes involved compared to other ancestries, but given all the ancestral population changes and genetics, there probably will be different genetic variants within a particular gene, which will help us to learn more about the biology of OCD, because not all genetic variation actually leads to a problem”. In fact, Grice notes that other ongoing psychiatric genetic studies in autism and schizophrenia that also focus on rare de novo variation do not show evidence for different biological profiles across different ancestries, so there is good reason to think these issues will be moot in BELONG.
Grice also clarified: “This study is focusing on genetics which plays a very important role in risk for OCD, and while there are also important non-genetic or environmental factors, those are not a focus of this particular study. We’re not saying it’s all genetic, but that is what we’re focusing on in BELONG”.
Recognizing the complex history of medical research involving minority communities, Onyeka reiterated that “We have a community advisory board that we’ve been working with, with different clinicians who are Black who work within this space in terms of providing treatment and therapy, and getting feedback from folks who are on the ground and actually engaging with these patients has also been helpful too”.
Despite genetics being the focus of the study, Onyeka mentioned that working directly with minority communities can provide insight into the environmental factors that shape OCD “I think one thing that I’m really excited about is the phenotypic component of this study. In addition to getting a really good assessment of OCD with the participants, we’re also getting a lot of different perspectives about different socioecological factors that might be related to OCD. Things like ethnic identity membership and awareness of treatment of symptoms and other things that, with a large sample, we hope to obtain”.
Jordan Cattie, PhD, of Emory University School of Medicine expressed, “Researchers can build trust by using approachable, clear, and informative language about how a study can help, or is different from previous work. For example, this study team shared that (in both existing genetics and OCD treatment studies) there is significant underrepresentation of Black Americans, which makes representation a really important priority. This study team is unique in including a community advisory board that focuses on how to make research helpful for communities, as well as health equity researchers.”
Many researchers and clinicians remain hopeful about the prospects of this research and understand its importance in expanding the knowledge of OCD risk.
“Ultimately, BELONG represents a unique research study that goes beyond the laboratory. This research is really grounded in altruism,” said Onyeka. “It’s a one-time experience for the participant — to be able to meet for the assessment, get an understanding of what OCD looks like for them, have the validation of talking to somebody about their symptoms, which can be really validating and helpful and affirming, and then participate with regards to the genetic component. But the dividends of that participation go far beyond what we can even operationalize or quantify right now, which is something that’s really incredible and not something that you see a lot with research in the Black community. I think just what makes this study really unique is how far your participation can go.”
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