Table 3

Thematic domains: voluntary participation and seeking permission from others, and comprehension of study purpose
Voluntary participation and seeking permission from others “Voluntary participation is when you decide on your own, not that you want to take permission from somebody before you participate. If you feel like participating and you participate, not that you are being forced to do it.” Breast Cancer Patient
“What I understand by this is that God gave us freedom of choice…so I can make a choice by myself.” Breast Cancer Patient
“It [joining a study] is a choice nobody is forced [to make] because each participant has a right to withdraw at any point and time.” Control Group, Woman from Community
“When you give your consent…you have your own will, from your mind you are interested. But an elder giving consent for you, it is just like the village we have mentioned…you are under compulsion to do it because the Baale said we must do it and everybody must do it. It is different from, ‘I want to do it,’ and I participated. The first one is out of free will and the other one is out of compulsion.” Control Group, Woman from Community
Comprehension of the purpose of the genetics of breast cancer study “[Purpose is to] know whether the breast cancer disease has a genetic origin…to know whether it is a genetic problem.” Breast Cancer Patient
“The researcher told us that it is through [the] blood test that we can know if we have problem with the gene in the body.” Control Group, Woman from Community
“Through our genes a child can inherit this disease [breast cancer] from us. You [researcher] will take our blood to know if we have a problem in our body. They want to find out about the gene that relates to my disease.” Breast Cancer Patient
“We all know that the body is made up of cells and each human being has her own peculiar kind of a cell formation and we believe that if a group of people have the same gene…they have similar problems…And this [breast cancer] gene varies from one family to another. So one will be able to know how one can benefit as [an] individual, as family and then as a community.” Control Group, Woman from Community

Marshall et al.

Marshall et al. BMC Medical Ethics 2014 15:38   doi:10.1186/1472-6939-15-38

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