Table 2 Themes with description and example quotes illustrating potential benefits and harms of social epigenomic research
From: Black community member perceptions and ethics recommendations on epigenomic research
Theme description | Example quotesa | |
|---|---|---|
Potential benefits | ||
Understanding disease risks and therapies | Contributions to understanding risks and causal factors for disease as well as the development of new therapies. | “So there are a lot of different environmental things that we need to know about because if we know about them younger, maybe we can do things that can put us into a position to where we have a longer life. But…, knowing is half the battle, and right now, we don't know the half of that battle because we don't have a full picture of that.”—FG2 |
Building awareness | Building personal knowledge of that social factors can impact health and awareness of how your experiences may be interpreted as “trauma”. | “I think it's a good thing because I don't think a lot of people, especially younger parents, realize that there are certain triggers that affect your immune system that also affect different childhood diseases and things”—FG4 “It also brings about a self-awareness aspect too, so what your experiences are, what your trauma is. Sometimes you think your trauma is just normal. Whatever you're going through is normal, but when you think about it, it's really not. So how do you want that to impact whatever family or community that you contribute to? So I think that's really important.”—FG7 |
Sharing knowledge in the community | Sharing knowledge among family and community members to spread information that supports health. | “So what we learn about our experiences and how it affects our genes and our health and things like that, we can pass it on. And every time we pass it on, that's more people that are aware.”—FG3 |
Potential harms | ||
Generalizations and assumptions | Labeling of individuals or communities based on research findings that ultimately leads to treating others differently. | “What worries me is when the young person, whether they're little or big, when they're growing up and their parents emphasizes things like something's wrong with them. But their parents get this from a doctor or something, and sometimes I think they can push that too far”—FG5 “It could be used to be like, "This group of people are better because of this gene," or, "This group of people are bad because they have these genes." And that way, create a lot of division and stuff”—FG3 |
Limitations of study findings | Harm from poorly done research that does not adequately consider all relevant factors (e.g. social and physical environment) or does not recognize the limitations of data collection and analyses in the reporting of the findings. | “And because what they're doing is for children, parents who fill out some of the information that they request, they're not always honest. They don't really tell you everything that's going on in their home, why that child might be stressed, that their living environment is not compatible with a person with asthma…But if you don't have all the information, then your results can't be accurate.”—FG1 “I feel like everybody's experiences are different. So it might be hard to come to a conclusion into what it specifically is, so that leaves a lot of room to be—confusion and can be interpreted different ways… they’re going to be like, ‘It's definitely that if you're like this, you're going to have this.’ So it's like, ‘But is it like that for everybody? How is it? Can it work for all people if you use this conclusion? Does it fit everybody?’"—FG3 |
Benefits to other communities | Research benefits that help wealthy and White communities first and may only come to Black communities later, if at all. This may be due to a lack of focus on conditions that impact Black communities, using Black individuals as “guinea pigs” to help others, or high healthcare costs that make the latest advancements inaccessible to individuals with lower incomes. | “So can I just say I would think a benefit would be finding cures. But at the same time, are they going to find cures for diseases or different types of conditions that black people have? Because a lot of research is done on things that—or there's a lot of money for cystic fibrosis, but what about sickle cell? So what about us?”—FG4 “Well, we’ve always been the guinea pigs for a lot of things.”—FG2 “I feel like they use us to say that they want to help our kind and da, da, da, da. But then they take their research, and they put thousands of dollars and say, "You got to pay this amount of money." And we know who's at the bottom of the charts right now when it comes to pulling out the dollars. So it's like at the end of the day, I feel like they're not really doing it for us. I feel like they want to say they using it to help our community, but I feel like they're using it and they taking it to make money and at that just control kind of control our population.”—FG7 |
Lack of transparency | Lack of full consent and transparency for all study activities, ways that data will be used, potential findings, and risks to individuals and communities. | “I can understand finding out genetically things like that, but is that really all you planning on doing with this? So that's the hesitation of it because are you truly going to do what you think you're going to do? Because how many times have you said one thing and did another?”—FG6 “So it's informed consent, number one, but number two, since then, the African American community has a distrust of health and healthcare providers because you never know, as somebody said earlier, is it being done for population control? What is the outcome, and how is it going to help the community versus any negative outcomes or other nefarious means that can actually hurt the community? “—FG2 |