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Table 3 Barriers to Dissemination and Adoption of Precision Medicine Approaches

From: Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos

Barriers

 Lack of Health Insurance

• “I wonder how many people could have access [to PM] benefits because many of us do not have “aseguranza” [health insurance], at least I do not have it.”

• “… people without [immigration] papers cannot buy health insurance and do not qualify for government benefits.”

 Financial Burden

• “… [PM] is an innovation, and it is something that everyone would like to have access to, but the negative aspect [of it] is that it must be expensive, so people would need to be in debt.”

• “… [PM] would not benefit the Hispanic community because it is a segmented community, and like others mentioned before me, I think that the cost of [PM] is a barrier.”

• “The cost that [a person] might have to incur because a test for each gene is needed … it is something that everyone wishes to be part of, but money is the problem.”

 Immigration Status

• “I think that it is an ambitious program … in general, a large segment of Hispanics without papers could not access [PM], and it would not be inclusive.”

• “… a large number of Hispanics without papers would not benefit because undocumented immigrants do not have access to many programs.”

• “I think that one’s immigration status is a problem because we are not protected. If something bad occurs, who is going to defend us?”

 Distrust of Government

• “… if the government keeps our [genetic] information, it can use it to deport us.”

• “I am worried that the government can have access my [genetic] information because it could use it for experiments without my knowledge and authorization.”

 Limited English Proficiency

• “I think that because Hispanics do not speak English, they do not go to the hospital, that is why it is important to have [there] someone who speak Spanish.”

• “I might not like to use it [PM] because there is no information about precision medicine in Spanish, but once they learn what [precision] medicine is, I think that the majority would like to get it.”

 Low Literacy

• “For me, everything that I am learning about genes and PM is not easy to understand because I did not complete secondary education, everything is new and am just learning about [PM] because I had never heard about all of this.”

• “I think that it is possible [to disseminate PM] through all means available that exist today, but the way that it is told should be changed. We know that the technical part would be term precision medicine o personalized medicine, so many would be confused when they hear these words … how about calling it preventive medicine so tha it could be easy to understand.”

 Cultural Norms

• “in Latin America, doing new things are like a taboo. When people need to donate blood … people are afraid to donate blood or donate organs.”

• “People will have doubts about [PM] because in the Hispanic culture, we will not participate in something unless we see or hear about someone who is cured with this medicine.”

 Fear about Genetic Testing Results

• “The fear that a person carries a gene; for example, my grandfather died from cancer, and now my sisters and I are afraid that we inherited his genes. That is why we are afraid of the results … even though we could know early if we can develop cancer, it is scary.”

• “The fear that a person carries a gene; for example, my grandfather died from cancer, and now my sisters and I are afraid that we inherited his genes. That is why we are afraid of the results … even though we could know early if we can develop cancer, it is scary.”

 Lack of Transportation

• “I think that [a barrier] might be the location where [PM] is offered. There are people who cannot get to their appointments due to lack of transportation.”

• “Many of Hispanic families cannot have money to buy a car and other stuff, and I think that even if they would want this medicine, they could not go [there] even if they want to get precision medicine.”

 Newness of PM Approach

• “… number 3 mentioned that from now on, medicine will be more efficient and faster, [but] that no one knows with exactitude …”

• “The problem [for me] will be if I am going to be one of the first ones participating in [PM], I will not know if it will be effective or not.”

 Lack of Information about Precision Medicine

• “The lack of information about precision medicine or personalized could be one of the first barriers, the second reason is the lack of information about the type of treatments will offer.”

• “I might not use [PM] because there is no information about it, but once there is information in Spanish, I could learn more about it, and I might use [it].”