Table 3 Focus group participant ideas of ways to lower risks of social epigenomic research, particularly for B/AA communities

Acknowledge and address biases and past injustices

The need for researchers to recognize and address both biases that exist in themselves and team members and past injustices toward B/AA communities. This can be addressed by acknowledging injustices with participants, including study team members with shared health or cultural experiences to participants, and considering biases in self and study team members that may impact findings.

“Do the researchers have the same issues? Say, the people that are doing the research, do any of them have the history of asthma that they can relate…[new speaker]Yeah. You're not seeing me as a specimen. You're seeing something you can relate to. Yeah.”—FG1

“I do have one other thing. As you do this, do not put together a group, test group, whatever you want to call it, and you come to a minority community—and I'm just going to be blunt—you come with a white face. If you're going to talk to the minority community, have somebody there that looks like them, that they're not afraid to talk to and ask a question”—FG2

“If it's something that's negative—but if I did research and got a negative result, I would kind of back up kind of like some of you have said and kind of try to see why did I get that. Was it that I didn't consider the environment, things like that? What led to that? And is it real, or is it—do I have a preconception?”—FG4

Ensuring transparency and understanding

Transparency by researchers in all the ways that data may be used and how data collection and study findings may impact participants and communities. This requires clearly written materials, willingness to have multiple discussions to ensure understanding, giving time for decision making, and continued interaction throughout a research study.

“Also, they might be scared if what they shared was too much or what would happen [to] information that they give. So sort of know what's okay, what's going to happen if you give out certain information. And maybe you're not supposed to give out certain other information. So yeah. Especially people in a community with trauma or anything. They grew up in a ghetto. They don't know how much is okay to share, how much is not okay to share, so.”—FG3

“If you're going to explain it to people about the research and, again, how it's going to be used or how you would envision it being used, letting people know that upfront. But also, again, let them know, take some time, and then come back to them… Research in the minority community is not going to be at the same pace that it may be in a non-minority community. It may be a little bit slower. It may be a little bit harder. But if you work to build the relationships, the data that you get will be so on target and will help in so many different ways.”—FG2

Positive framing of research

Not just focusing on vulnerabilities but studying positive outcomes and framing research findings in a way that highlights actions that can be taken to positively impact health.

“When I think about just about all of our parents had so much trauma in their lives. But we got a lot of kids that are doctors, lawyers. I mean, we have a lot of kids that rose above all of the areas that they lived in and what they were around. They need to be looking at what are the success stories, what can we learn from the success stories. How did they rise above their circumstances? And what did that do? Which gene did they turn on or off in order to do that?”—FG3

“So rather than labeling, it's kind of let me better understand so we can develop or have resources to support…[new speaker] This is just limiting versus limitless if you're giving me the options so I know how to improve myself.”—FG7

Thorough research and dissemination

Incorporating activities that support optimal data collection and analysis so that findings are valid and reliable. Dissemination that is responsible in reporting both findings and limitations, and that includes efforts to share findings with the communities that are impacted by the research.

“If you're comfortable, you're more willing to give more information, especially if it's experiences. It's hard to capture people's experiences, I don't know, on paper or whatever. But if you're uncomfortable, you don't know what—if they're uncomfortable, they're holding back. So you're not getting the full thing that you need for your research, depending on how much they're giving or not giving to get their full story. Also, how you capture their experiences and what kind of questions you ask them. Some specific questions might have been given an answer to certain questions, but we'll leave out certain things because we didn't understand it and interpret it differently.”—FG3

“Share the data. What is the purpose of doing research if you're not going to share the data, whether it be good or bad, with the community that you're using as your test models?”—FG4

Engaging with communities

Engaging communities in ways that not only includes community members in all stages of the research process, but that also builds relationships and supports participants and communities before and after research studies.

“But I think it would be advantageous for people who are doing research to also give the parents and the people in the studies resources and information that helps them and not just use them as a test participant.”—FG4

“How about we find better ways to make everything better. Let's get some fresh fruits or vegetables out there. And maybe even some people who need medications who can't afford it. Let's get them help. Let's get things on the road.”—FG5