Table 4.
Barriers associated with clinical PRS
| Themes/Subthemes | Example Quotes |
|---|---|
| Access disparities | “If the testing is not free, some people who do not have medical insurance may have a problem. If it’s an elderly and you have to move from one location to the next to do the testing, transportation may be a barrier.” (P06, Eng-speaking) |
| Financial barriers | “Maybe they have access to a hospital at a low cost, or they can get help, but they don’t want to skip work because they think they need that money, you know? If they miss one day’s payment, their finances go down.” (P35, Sp-speaking) |
| Health insurance coverage | “Those tests aren’t routine tests and sincerely no one does them and no insurance wants to pay for it, because I know a lot of people that want genetic testing because their mom had ovarian cancer or breast cancer and they don’t want to have them tested.” (P19, Sp-speaking) |
| Potential for limited access to clinical PRS on the basis of race and ethnicity or preferred language | “Sometimes it [genetic testing] may not even be offered to an African-American.” (P03, Eng-speaking) |
| Limited understanding of PRS | “I would think, based on how it’s conveyed to the patient, it may be difficult for them to really understand what it is and what the risks are. They may need a little bit of research. They may need to speak to their own physician about what they’re looking at and talk to their peers.” (P27, Eng-speaking) |
| Limited health and genomic literacy | “You have some of those who just don’t understand medical language. You can tell them this until blue in the face, they don’t understand it.” (P05, Eng-speaking) |
| Would seek additional information to build understanding | “…there should be more brochures going around…if you don’t see the information and the doctor doesn’t talk to you about this either, people won’t understand.” (P29, Sp-speaking) |
| Language as a key element to understanding | “I can translate from English or Spanish, but my preference would be in Spanish to be able to understand better what they’re talking about, the results, the words you don’t understand, if you don’t get it in Spanish, imagine that, you won’t get them in English, that’s a point that’s important to me.” (P33, Sp-speaking) |
| Use of nontechnical lay language is preferred | “…not all of us understand genetics, it should have terms that are simple and easy to understand.” (P32, Sp-speaking) |
| Communicating in patients’ own (preferred) language | “… the language is very important because sometimes there are people that speak English and they speak a bit of Spanish and they try but they don’t explain things well, so it’s very important, the language the doctor speaks.” (P39, Sp-speaking) |
Eng, English; PRS, polygenic risk score; Sp, Spanish.