Table 1.

Participant perspectives

Potential Benefits of Testing
 Perceived utility in routine care“We gotta know. First thing I would do is live a healthier life, change my lifestyle, and maybe they will find a cure at some point or a way to help us better.” Seattle
“Not a lot I can do, but at least I know.” Seattle
 Perceived utility in kidney transplant“If [the donor has] APOL1 risk and they hand off their kidney, then the other kidney might fail.... So the donor needs to know, and the recipient needs to know.... Everyone should be tested and just have the knowledge.” Seattle
 Research (both settings)“If they test everybody for it and they see enough people have it, it may prompt them to study it more and figure out if they can make a medicine or cure for it. But enough people have to have it first.... The numbers would have to probably go up, because like we said, there is a lot of racism. So stuff that affects black people does not really get researched...” Nashville
Potential risks of testing
 Perceived lack of utility in routine care“What difference does it make? If I take the test, it’s just going to be part of my record that I have this genetic disorder. But nothing can be done about it, there is no preventive medicine....” Nashville
“I just don’t buy this incentivization [idea]. I don’t. We have the information. We all know that black people get hypertension. Adding one more thing, it is not as if this is the reason I am going to start running.” Seattle
 Reduced kidney supply“If you do the test ... and you discover they have APOL1, at some point they are going to establish that you cannot get a kidney from somebody who has that. That is going to put a lot of black folk at the bottom of the list again.” Nashville
 Discrimination and stigmatization“The first thing that I thought ... is, ‘oh another category where we can’t trust the doctors because they are not going to give us the information anyway, and that’s a form of discrimination. We are usually the last people to get information about anything, and then we have to fight for it.” Seattle
 Psychologic burdens“I have this knowledge and now I am going to be sitting at home petrified.” Nashville
“This test will bring about paranoia.” Nashville
 Misunderstanding/confusion“If you tell someone ‘you have the risk, they say, “oh God I am going to die.” this [information] is good, if you understand it. This is perfect, if you understand it.” Nashville
Mistrust of health care and research and importance of community engagement
“It’s been 7 years since they have known about this and they have not come up with a solution?” Jackson
“Any time you study us you are looking for a reason to exclude us. ... You are finding it, but you cannot do anything for me except raise my insurance rates, so why are you finding it?” Nashville
“I feel like [community education and programs are] really important. In the African American community, when we see the government doing something to help us or bring awareness to something, we may be more likely to do it. I always think about how we get the short end of the stick or get left out. Black people were strung out with crack for years and nobody cared. White people are strung out on heroin and now it is an epidemic and the government doing all these things to help them and all these studies .... I feel like if they did that with this the African American community could see that they do care about us.” Nashville