Table 3 Influences of DEI policies in genomic research
From: Underrepresented populations in genomic research: a qualitative study of researchers’ perspectives
Subtheme | Selected quotes |
|---|---|
Lack of influence on research | Quote 40: "For my research, because these were populations that were selected based on a diagnosis, so a brain tumor in the adults or pediatric cancer in children or rare inherited disorders, those were not selected based on equity, diversity or those kind of inclusion criteria. That's what was in front of us regardless of what your ethnicity was or your sexual orientation, and so. From a population recruitment standpoint, the population was a one-off defined by their disease." Participant #9 |
Quote 41: "Close to not at all. So, there's a lot of, this is my perspective, but there's a lot of whistling towards trying to sort of look good and sort of like we feel good that we're addressing issues, but the reality is that it fundamentally [doesn’t] change what people are proposing to do. They're just managing the process to say what needs to be said in order to get the resources and the funding to do what they would want to do anyway. And so, I don't think it makes a profound difference in what happens in terms of research. We can certainly, you know, researchers are very good at managing application process to say what needs to be said to. Get the funding. But I don't think it changes the nature of the research that's pursued." Participant #13 | |
Positive influence on research | Quote 42: "We have a whole working group looking at data diversity or inclusion. Not just the EDI aspect in the general project, but really in terms of data and then thinking about how we can first calculate metrics to find out what we have. Then think about how to support the generation of a more inclusive data set. I really think that this will bear fruit. I think, modifying existing projects to better capture these additional concepts. And also, I think, as I was saying before the question, even directly funding projects where this is the emphasis, I think that's very relevant and very positive." Participant #4 |
Quote 43: "I've seen that carry through from not only the research institutes and the research funders, but also in the healthcare landscape and the health system decision makers, all of whom are now stakeholders of part of my equity research and that wouldn't have been possible, you know, before the pandemic or five years ago, now that the world has moved to prioritize equity, diversity and justice and access especially in the health space. It's become an impetus for my work to actually move forward." Participant #5 |