Table 2 Relation between participation and population descriptors
From: Underrepresented populations in genomic research: a qualitative study of researchers’ perspectives
Subtheme | Selected quotes |
|---|---|
Importance of context | Quote 18: "I think it can go either way depending how it's done. So, I think if people feel that you're asking for their race and ethnicity and categorizing them in order to be able to get the best quality evidence and to be specific and to be accurate, then I think they will appreciate the chance for that. But I think if people feel that you're going to discriminate against them in any way because of it, or treat them differently, or come up with negative conclusions. Then it can go the other way." Participant #3 |
Quote 19: "I think how research is promoted—how we do the promotion, how we make our announcements—it can go either way. I think it can be detrimental […] if we don't explain properly why we're doing it. And if we find a way of clearly explaining the aim […] [I] think that can help. If you simply mention it without explaining why, I think it can be harmful or at least give rise to fears and concerns." Participant #1 | |
Complexity of admixture | Quote 20: “But the real challenge in genetics right now is admixture. For example, you can have individuals with one African ancestor and one Asian ancestor, who got married and had children. So, it’s not that simple—how will they identify themselves? […] And even people with white skin, for example. I don’t know…In France, there are a lot of people from North Africa living in France. And when couples form, how will their children identify themselves? That’s the reality nowadays, there is much more admixture." Participant #2 |
Possibility in categorization | Quote 21: "Through our community partners who are working in the hereditary cancer space. We've created posters in trying to explain the communities that we'd like to speak to. And we use the word racialized, but we've also just invited the community partners to use the words that they're comfortable with using, that their community partners and the patients and just their community members find appropriate." Participant #5 |