Table 3.
Barriers for LRRP Following RoR
| Themes | Quotes |
|---|---|
| Financial Challenges | “With respect to, getting access to paying for that appointment or access to, like, different screening programs. That’s beyond me… [the study] can’t pay for anything beyond, the study-related activities. None of the downstream care. Which is tough, I know.” (Informant 31, Small, Disease-Focused Program) |
| “We try to use the available resources through the health system to cover care when possible. It certainly is a burden for some patients to receive a result.” (Informant 18, Large, Disease-Agnostic Program) | |
| Limited Investigator Resources for Ancillary Care | “Some hospitals see themselves as having a role in…protecting their patient population from any harm that may result from research. So, there’s a lot of work to establish trust. So, I think the amount of time it takes to establish trust is often under-estimated. But it’s very important.” (Informant 12, Small, Disease-Agnostic Program) |
| “Like, number of times we contact; number of times we outreach. Number of times is just significantly more in the underserved compared to the [general population]—just small things like that, that take a lot more resources to contact underserved populations than not.” (Informant 01, Small, Disease-Agnostic Program) | |
| “Again, because we recruit within the institution with people who do get health care here, I would expect that it wouldn’t be as much of a hardship for them to come back here and that they have services set up so that they have transportation to get to the institution here.” (Informant 26, Small, Disease-Agnostic Program) | |
| Participant Education and Genomic Literacy | “The biggest worry we have is that if they have an uninformative result, we don’t find any variants, they might interpret that to mean that they are not at risk for [anything]” (Informant 13, Small, Disease-Agnostic Program) |
| “I would say, it gets quite uncomfortable because as the language becomes more simplified, it also becomes less precise. And so, for those of us who understand all the technical terms, it actually feels like you’re not saying -- making a correct statement because it’s so simplified. So, I think that that’s why it’s really hard to make it simple, but also make it be an accurate statement.” (Informant 23, Small, Disease-Focused Program) | |
| “The word database reads at a pretty high reading level. Unpacking the concept of a biobank reads at a pretty high reading level. And so, no matter what you do with sentences around the sentence that introduces this concept of a biobank or a database, still, you’re using that word -- a compound, complex word.” (Informant 07, Medium, Disease-Agnostic Program) | |
| “I think there is an over emphasis on genetic literacy. I think that people use all kinds of analogies, care repairs, whatever. People need to - people need to have enough knowledge to make an informed decision, that doesn’t mean they have to understand how it all works. In my experience doing clinical genetics for 25 years is that we spend too much time trying to teach people Genetics 101. From our interviews from parents, our discussions with parents, parents basically want to know, ‘What’s important to me and my child?’” (Informant 24, Small, Disease-Focused Program) |