Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa | BMC Medical Ethics

Amanda Gerla

We grouped our findings on the experiences of how biobanking and future genomic research was explained and understood in this study under three sub-headings: (1) the way the research team explained biobanking research; (2) what participants said they understood from this explanation; and (3) how participants think biobanking and future genomic research should be explained to people in this context.

In total sixty-seven people with ages ranging from 22 to 75 years-old were invited to participate in the qualitative sub-study; specifically eight staff members, twenty people who had declined to partake in Vukuzazi and 39 who had participated in Vukuzazi. A total of thirty-nine people accepted our invite to participate in the study so our results were produced from thirty-nine interviews conducted over an eight-month period with twenty-four individuals who participated in Vukuzazi, seven of those who did not participate in Vukuzazi and eight members of the research team that worked in the study.

The way the research team explained biobanking and future genomic research

The ICF was the primary source of information for participants and the research team’s explanations were mainly a means of consolidating what is in the ICF by talking through its contents to provide emphasis and to provide clarity for those who did not understand the contents or may not be able to read. All explanations were provided in the local language of IsiZulu. A clinical member of the research team insisted that participants do receive an explanation about biobanking and genetics, but some end up forgetting because they do not give themselves the necessary amount of time to listen:

They get an explanation. There are some people that need re-explanation when the follow-up team comes around because they were in a rush when they got the first explanation and didn’t quite get what was said (Participant Twenty-three).

However, some participants claimed that they were only told that their blood samples would be used for health screening purposes, and they did not know of anything more than that. A participant claimed that the research team “didn’t explain anything to me regarding the blood samples.” (Participant Six).

Furthermore, in response to a question about whether they explain the genomic research component to participants and why some of them cannot recall or understand it, a clinical member of the research team stated that some participants were not interested in any explanations because they just want the grocery voucher which was provided for taking part in Vukuzazi:

They understand what Vukuzazi is all about although there are young people whose purpose isn’t to know about the state of their health, you explain everything to them but you can see that they aren’t really interested because they are just there for the voucher. (Research Team Member Five)

It is important to note that the informed consent process unfolded in the following manner, as described by a old male clinical member of the research team:

Upon arrival at the community-based health screening platform, participants are seated in groups of ten to twenty and they are given an ICF to read through which provides full details of all study procedures including the biobanking and genomic research component. Thereafter, a member of the research team explains the contents of the ICF and gives participants an opportunity to ask questions regarding the ICF—roughly fifteen to thirty minutes is allocated for participants to read, ask questions and think about whether they want to participate. Prior to the participant’s arrival and as part of the recruitment and consenting process, participants receive a detailed initial explanation about the study and its procedures when the research team visits their homes to recruit them. (Research Team Member Five)

Another clinical member of the research team confirmed that they do not usually go into great detail when explaining the biobanking and genomic research component of the study, but they tried to explain genetics by referring to similar characteristics shared among family relatives as well as different responses to treatments among people with the same disease:

What we tell them is that there is a blood sample that we are going to use to test their genetics and they know that they won’t get the results of these tests because the research is still under way. We give them an explanation if they ask for one. We explain that sometimes you may have an illness and there is a relative or a family member that has it too and you are both on treatment for that illness, but your bodies don’t respond to it the same way. The difference in response is due to our differing bodies and genetic make-ups. (Research Team Member Six)

She went on to divulge that when people did not understand they tried to further explain by talking about hereditary features and characteristics among family members:

Some people don’t really understand what genes are even when we explain it to them. We try to explain it by saying that there are some diseases that just run in the family—like diabetes—one might be surprised to learn they have diabetes, not knowing that someone in their family has previously had it too. I also explain it to them by making an example of a couple getting into fights because the wife gives birth to a light skinned baby, yet the husband is dark skinned and thus believes the baby is not his. It may very well be that someone in their family from previous generations had those light skinned genes and the new-born baby took after them.”

The study’s objectives, including the biobanking aspect, were explained during a participant’s recruitment, upon their arrival at the research site and at each individual station within the site. All these explanations were given by different team members with different team functions at each point and according to a clinical member of the research team, explanations varied in the detail provided:

People are different, some explain clearly what was told to them at home but sometimes we find that the information they got at home was inadequate. As nurses it is also our job to explain the purpose of the study again because we are the ones who understand it better than the recruiters. In terms of percentages, most of them arrive knowing what it is all about. They give their consent knowing exactly what they are consenting to because there are also various talks given at the camp site before they get to us the enrolled nurses. (Research Team Member Five))

The different types of explanation required at the screening points (referred to as stations), where different types of tests were done or measurements taken, caused some confusion as was observed by Participant Nine:

But there were some stations at which I didn’t get an explanation—like at the measurements station—they just told me they would be measuring this and that and then you will go to that station. When I got to that station, they just said we will be taking blood samples into all of those tubes.

What participants said they understood and recalled from this explanation

Overall, participants’ recollection of explanations related to genetics and biobanking was limited, possibly because of the time which had elapsed (7 months) between them being consented to join Vukuzazi and them being asked to recall what they were told in our sub-study. Participant Twenty-One, for example, when asked about how genetics and biobanking was explained to her, attributed her lack of recollection to the length of time that had passed:

I can vaguely remember them mentioning something about DNA but I can’t quite recall the context in which it was mentioned. It was a long time ago, you will have to forgive me. I think they just said they would be observing how our genes behave. That is all I can remember. I’m sorry.

Participant Ten narrated her account of what was explained to her regarding genetics and biobanking but ultimately admitted that she remembered some but not all of the details that was explained to her:

I don’t remember accurately. I remember one of the guys I lived with asked him about some results and the AHRI nurse said they would come back in future because they are still waiting for the right machines to process them. I forgot what illness she said that is. Yes, she said the machines have not arrived but I can’t remember what illness that was. […] but I can’t quite remember anything about DNA related stuff you know.

In response to a question about her understanding of what the study she participated in was about, Participant Fourteen said that could not remember the exact details of what was discussed with her because of the large volume of information that was explained to her during the consenting process. Referring to the staff member who gave her the explanation, this woman noted that: “She spoke quite a lot. I don’t remember what she said exactly. But she definitely did explain. She didn’t hide anything.”

When asked about why participants had such poor recollection and understanding of the genetics and biobanking component of the study, Participant Twenty-Three revealed that a lot of participants are probably not interested in this part of the study, hence they do not pay much attention when it is being explained:

Some probably aren’t interested in hearing about this. How can I put this, some people just aren’t interested in knowing about their state of health anyway. They are just ok with not knowing themselves. They just go there because they heard they will get something in return. Some people are just there for the vouchers. Not because they genuinely want to wake-up and know themselves like the name of the study says.

On the other hand, when asked the same question, participant Twenty-Two alluded to the fact that the complexity of certain terminologies and concepts of genetics and biobanking would be difficult to understand for most people. However, she went on to note it is possible to understand if one really makes an effort:

…it is complicated when you consider the many factors that are involved. The family members, the illnesses, the types of medication and how all these factors relate in this entire process. People often just choose to believe that medication fails to work because it just doesn’t work – that is just the easiest thing to believe. I think if one listens to the explanation properly and they want to understand, they can understand.

Participant Twenty-Four noted that some people may not understand or recall the genomic research component of this study because “some people don’t believe in these things. These DNA things, these scientific things. There isn’t much I believe in. I’m sceptical about a lot of things.

Considering that there were certain participants with limited literacy levels, there was significant variation in people’s ability to understand genetics and biobanking. This was evident in Participant Thirteen’s response to a question about what she understood and recalled from the information sheet and consent form she said “I understood that nothing was compulsory so if you didn’t want to do something you could just say so. I signed with a cross because I don’t know how to read.”

How participants think the consent process should have been conducted to facilitate better recall and understanding of biobanking and genomic research.

The participants felt strongly about the fact that all parts of the study, including biobanking and genomic research, should be explained slowly and thoroughly while giving people the opportunity to ask questions—as was discussed by Participant Twenty-Four:

I think as a Zulu person yourself you know that our people tend to be stubborn. They want things to be explained thoroughly and fully. They want to be made to understand that doing this will eventually benefit them and future generations. They need to be shown how this will all happen. People need things explained slowly and they must have the freedom to tell you if they don’t understand. Remember at some point during your explanation I told you that you didn’t make sense? And then you put it differently.

He went on to allude to how the delivery of explanations regarding information related to the study is the most important part of the work any researcher does, particularly when doing research that involves biobanking and future genomic research because it is more complex and difficult to understand:

That’s what is most important, people doing the sort of work you do (explaining biobanking and genomic research) need to be very patient and clear in their delivery of explanations. They should take their time and the problem is sometimes they are in a rush to finish so they can go do their own things. Patience would really help.

When asked about how best to explain genomic research to participants such as those in this context (with low income and low literacy), Participant Twenty-Two suggested that an emphasis on hereditary characteristic should be made:

What can I say… you can explain it by saying that the research looks at hereditary characteristics in your family and how they relate to illness that one has or might be susceptible to. It’s not necessarily that you got infected. Yes, the ‘hereditary’ concept needs to be emphasised.

When an explanation describing genomic research in the context of hereditary characteristics and their relation to illness susceptibility was given to Participant Ten, they acknowledged that explanation was good: “I think the way you explained it was good.”

In summary, the findings of this paper demonstrate a mutual interconnectedness between the experiences of explaining and understanding biobanking and future genomic research. Our exploration of participant’s understanding of biobanking and future genomic research in our context conveyed two key messages: firstly, participant’s understandings of the biobanking and genetics explanations were affected by their interests in the study’s broader health screening agenda. Secondly, the researcher’s ability to slowly explain and break down scientific concepts in lay terms, without being affected by the participants interest or lack of interest and whilst giving the participants time to ask questions, directly affects how biobanking and future genomic research is understood.

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