Kisiangani et al. BMC Medical Ethics           (2022) 23:27  
https://doi.org/10.1186/s12910-022-00767-y
RESEARCH Open Access
Perspectives on returning individual 
and aggregate genomic research results 
to study participants and communities in Kenya: 
a qualitative study
Isaac Kisiangani1*, Shukri F. Mohamed1, Catherine Kyobutungi1, Paulina Tindana2, Anita Ghansah3, 
Michele Ramsay4 and Gershim Asiki1 
Abstract 
Background: A fundamental ethical challenge in conducting genomics research is the question of what and how 
individual level genetic findings and aggregate genomic results should be conveyed to research participants and 
communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim 
of this study was to explore the perspectives of key stakeholders’ on returning genomics research results to partici-
pants in Kenya.
Methods: This qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 
stakeholders. The purposively selected participants, included research ethics committee (REC) members (8), com-
munity members (44), community resource persons (8), and researchers (9). A semi-structured interview guide was 
used to facilitate discussions. Six FGDs and twenty-five (IDIs) were conducted among the different stakeholders. The 
issues explored in the interviews included: (1) views on returning results, (2) kind of results to be returned, (3) value of 
returning results to participants, and (4) challenges anticipated in returning results to participants and communities. 
The interviews were audio-recorded, transcribed verbatim, and coded in Nvivo 12 pro. Thematic and content analysis 
was conducted.
Results: Participants agreed on the importance of returning genomic results either as individual or aggregate results. 
The most cited reasons for returning of genomic results included recognizing participants’ contribution to research, 
encouraging participation in future research, and increasing the awareness of scientific progress. Other aspects on 
how genomic research results should be shared included sharing easy to understand results in the shortest time pos-
sible and maintaining confidentiality when sharing sensitive results.
Conclusions: This study identified key stakeholders’ perspectives on returning genomic results at the individual and 
community levels in two urban informal settlements of Nairobi. The majority of the participants expect to receive 
feedback about their genomic results, and it is an obligation for researchers to see how to best fulfil it.
Keywords: Genomics, Return of results, Aggregate level, Individual level
Background
*Correspondence:  ikisiangani@aphrc.org Return of results to study participants and communi-
1 African Population and Health Research Center (APHRC), P.O. Box 10787, ties involved in research has become a major topic of 
Nairobi 00100, Kenya
Full list of author information is available at the end of the article debate [1–4]. The issue stems from the gap between 
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Kisiangani et al. BMC Medical Ethics           (2022) 23:27 Page 2 of 11
the preferences favouring returning research results in sub-Saharan African countries because of the lack of 
that many study participants and community mem- national guidance on genetic research [35].
bers want versus the past research practice to avoid This study sought to address this gap by exploring views 
returning results to the research participants [5]. The from key stakeholders and community members on how 
controversy is whether or not researchers have any genomic results should be communicated to study par-
responsibility to offer participants results [6–10]. Other ticipants and communities. The evidence generated in 
questions remain about what results should be commu- this study will be useful in informing future research on 
nicated to individuals and communities, how to com- disseminating findings to the community.
municate the results, and who should be involved in the 
process [11]. Researchers’ main concern is integrity and 
the societal benefit of research rather than the partici- Methods
pants’ best interests [12]. They maintain that returning The study is reported per a set of standardized criteria for 
results could cause undue distress whereby the risks are reporting qualitative research (COREQ) [36].
likely to outweigh potential benefits [13–15]. Despite 
this, there are increasing calls to return research results 
to study participants aligned with participant engage- Study site
ment and open science [16–20]. The consensus is that The study was conducted in two Nairobi urban informal 
returning research results to participants is good prac- settlements in Kenya (Korogocho and Viwandani) whose 
tice, based on the moral obligation of respect for per- populations have been under demographic surveillance 
sons [11, 21–23] and on a ‘soft’ duty of care owed to since 2002 as part of the Nairobi Urban Health and 
research participants, particularly when the findings Demographic Surveillance System (NUHDSS) [37, 38].
are clinically significant [24].
In genetic and genomic research, the focus has pri- Study design
marily been on what information, if any, to offer back to Focus group discussions (FGDs) and in-depth inter-
research participants considering the inconclusiveness views (IDIs) were used in the study as part of an explora-
surrounding most genetic results [25–27]. Some authors tory qualitative design with a participatory approach. 
argue that sharing aggregate findings from genomic stud- We used purposive sampling procedures to identify 
ies should be viewed as ‘sharing knowledge’ rather than and conveniently select various categories of stakehold-
‘returning results’ [28]. The impact of genomic research ers. Four stakeholder groups were formed. Stakeholder 
will be enhanced when communities embrace the results group 1 included community members selected from a 
and fully understand its value to their families and future genomic study (African Wits-International Network for 
generations [29, 30]. If appropriately communicated, the Demographic Evaluation of Population and Their Health 
results are likely to foster a sense of uniqueness in the (INDEPTH) partnership for Genomic Studies (AWI-
context of a larger population. Gen) phase I study participants (n = 44). The AWI-Gen 
There is very little evidence on how to involve commu- phase I study’s main goal was to identify the contribu-
nities in genomic research beyond the sampling and data tion of genetic and environmental factors to cardiomet-
collection stages, which includes feedback of findings abolic disease in Africans [39]. Details of the AWI-Gen 
[31]. This also includes modalities of disseminating indi- study are described elsewhere [40]. Stakeholder group 2 
vidual and aggregate genomic research results to study consisted of community resource persons, including vil-
participants and their communities [32, 33]. The dissemi- lage elders (n = 2), administrators (n = 2), community 
nation of aggregate findings as part of knowledge sharing health volunteers (n = 2), and religious leaders (n = 2). 
not only accurately describes the exercise, but also helps Stakeholder group 3 consisted of the research team of 
to alleviate some of the risks associated with returning AWI-Gen phase I in Nairobi, i.e., the genomic research-
non-individual aggregate results’ [28]. One of the biggest ers (n = 2), fieldworkers (n = 4), study coordinator (n = 1), 
challenges in sharing aggregate knowledge is determining and laboratory technologists (n = 2). Stakeholder group 
appropriate methods and how communities’ perspectives 4 were members of research ethics committees who 
should be incorporated into policies guiding when, how, reviewed genomic study protocols in Kenya (n = 8). 
and what to return to study participants and communi- All participants were invited to participate in the inter-
ties involved in genomic research. The Human Heredity views either by email or in person by trained research 
and Health in Africa Initiative (H3Africa) developed and assistants. We contacted a total of 80 participants but 
released guidelines in 2018 to assist genomics research- 11 declined to participate due to various reasons includ-
ers in deciding what and when to share individual genetic ing "lack of confidentiality" and "busy schedules." Table 1 
findings [34]. These guidelines have become important contains a summary of all participants.
K isiangani et al. BMC Medical Ethics           (2022) 23:27 Page 3 of 11
Table 1 Distribution of participants
Data collection type Participants No. of interviews Total 
participants
Focus group discussions (FGDs) AWI-Gen I women 2 15
AWI-Gen I Men 2 16
REC members 1 7
AWI-Gen I research team 1 6
In-depth interviews (IDIs) AWI-Gen I community members 13 13
AWI-Gen I researchers 2 2
Administrators 2 2
Village elders 2 2
Religious leaders 2 2
AWI-Gen I field coordinator 1 1
REC member 1 1
Community Health Volunteers 2 2
Total 31 69
Research team workplace. A total of 6 FGDs and 25 IDIs were held. 
One of the seven authors (I.K.; S.F.M.; C.K.; P.T.; A.G.; There were 6–10 participants in each of the FGDs. 
M.R.; and C.K.) with a professional interest in genetics Table 1 shows the different types of interviews conducted 
and community engagement conducted some interviews. and the distribution of study participants by the type of 
All the researchers have worked in the medical field and interview conducted. We used a piloted interview guide 
have experience conducting in-depth interviews. Before in each study site to obtain information mainly on: (1) 
the interviews, the interviewers had no prior knowl- opinions on returning results; (2) types of results to be 
edge of the study participants, either personally or returned; (3) value of returning results to participants 
professionally. and (4) challenges to be faced in returning research 
results to participants and communities.
Research instruments
The initial interview guides were based on questions Data management and analysis
that the researchers had identified after reviewing the The audio files were first transcribed verbatim then the 
literature, and the guides were updated as new themes Kiswahili transcripts were translated into English. The 
emerged throughout the study. Stakeholder groups 1–4 notes taken during the interviews were used to comple-
were interviewed using an interview guide containing ment the transcription. The transcripts were labelled 
organized and unstructured questions. FGDs with groups with the location of the interviews, the date of the con-
1, 3, and 4 used a similar semi-structured discussion versation, the gender of the group, and the role of the 
guide to elicit in-depth perspectives and discussion on group in the community. We read the transcripts and 
returning results to study participants. developed themes from the participant data and research 
questions to form a coding frame. We used QSR Inter-
national’s Nvivo 12 software (QRS International Pty Ltd, 
Data collection 2014) to code the data [41]. Two research team members 
We collected data between October 2019 and January reviewed and coded the transcripts to ensure objectivity 
2020. Data were collected by trained interviewers using and consistency of the coded information. Following the 
semi-structured interview guides. The interviews were coding of the transcripts, the two research team mem-
conducted in both English and Kiswahili. The team was bers looked for patterns in data and made connections 
trained on the study rationale, the objectives, research to pre-existing and emerging themes. They compared 
strategies, data collection procedures, note-taking during the outcomes to see if there was any agreement. A dis-
the interviews, research ethics and how to get informed cussion was held in case there were disagreements until 
consent. The interviews lasted 45–60  min and the con- they reached a consensus. The following themes were 
versation were allowed to flow naturally. pre-established: taking feedback of research results seri-
IDIs and FGDs were held in a private setting selected ously, the relevance of information, emotional reaction, 
by the participants, most usually in their homes or types of results, methods of returning results, timing of 
Kisiangani et al. BMC Medical Ethics           (2022) 23:27 Page 4 of 11
the results, benefits, effects, understanding results, good tests so that they can know their status whether they 
ethical practices, challenges, and strategies to address the have high blood pressure or diabetes. If you keep 
challenges. silent, the locals in Korogocho cannot know the prob-
Analysing the data from different perspectives lems they have. FGD Women, Korogocho, R6.
strengthened external validity. We triangulated interview 
data from various sources (community members, study The majority of study participants felt that returning 
researchers, and research ethics committee members) results is a sign of respect to them and it maintains the 
to improve the internal validity of this study [42]. At the relationship between them and researchers.
analysis stage, data saturation was attained when no new First of all, it builds trust; trusting one another 
themes were identified. because I got to know that the research that you are 
doing. One, because [Researchers] continue to do as 
Results [they] say. Thus, the first thing it [did was making] 
Respondent characteristics I trust you. Second, [I would like] to state that the 
The demographic characteristics of respondents are pre- results confirmed what I had already tested. Even 
sented in Table 2. In total, 69 participants participated in though I knew [my condition], the results [confirmed 
the study. The majority of the participants were Chris- it]. I knew you had done the tests and diagnosed that 
tians with a fairly equal gender representation. problem. FGD Males, Viwandani, R10.
Despite the researchers’ efforts to return results to 
Importance of genomic research results study participants, some participants reported not 
Study participants perceived the return of results to be an receiving their results. They encourage the research team 
important aspect of genomic studies. They noted that the to make sure results are returned to all study participants.
return of results enabled them to know their health status 
and seek appropriate care. They did not give us feedback. Therefore, [Research-ers] should give us feedback on the research they 
It is good to return the results to the community. This carried out before. They should tell us, "Yes, we did 
is because when they say the number of those with not diagnose anyone with complicated diseases." Or, 
high blood pressure against those who don’t, those “We found out that a few people have complicated 
with diabetes compared to those without, it means diseases and we will do this and this so that the dis-
those who don’t have will be determined to go for the ease does not spread or affect young children. FGD 
Table 2 Demographic characteristics
Participants Research staff Community CHVs Administrators Religious Village elders REC members Staff-field 
member: leaders workers
Awigen I 
participants
N = 69 2 44 2 2 2 2 8 7
Age range in 35–44 45–68 48–50 33–56 44–60 70–72 28–71 26–38
years
Median age 40 53 49 45 52 71 40 32
(years)
Mean age 40 54 49 45 52 71 47 32
(years)
Men 2 19 1 2 2 2 5 3
Women 0 27 1 0 0 0 3 4
Education Tertiary (2) None (1) Primary Secondary (1) Secondary (1) Primary incom- Tertiary (8) Secondary (2)
incomplete plete(2)
(2)
Primary incom- Tertiary (1) Tertiary (1) Tertiary (5)
plete (20)
Primary com-
plete (8)
Secondary (14)
Tertiary (1)
K isiangani et al. BMC Medical Ethics           (2022) 23:27 Page 5 of 11
Women, Viwandani, R4. individuals [can] understand their status. Because, 
The return of results to study participants influences even during that program we only [learned about] 
their future participation in research studies. Majority the superficial conditions [and] did not receive blood 
of the study participants noted that they would be more test results, and we would like to [learn more about] 
motivated to participate in future studies if the research- what is happening in our bodies. FGD Males, Koro-
ers returned the results from the earlier study. gocho, R2.That is why we are suggesting that after research, 
The current method used to return results can influ- the results should be released earlier. For instance, 
ence someone not to participate in the research there are very many cancer cases nowadays; if one is 
because they are not sure if they will get results or at stage 1, [it is preferable to begin] treatment early 
not. It is now years since they did blood tests and we [rather than] waiting until stage 4, which requires 
are just wondering if ever we will receive our results. millions [of shillings], which we do not have. So, it 
Therefore, even if I am told that there is another would be [beneficial] to receive the results [as soon 
research being done, I will not be motivated to par- as possible] so that [low-income] people can receive 
ticipate because I am unsure if I will receive the treatment. FGD Males, Korogocho, R1.
results. It would be good if the results were [made 
available] in real-time or shortly afterward to moti-
vate more people [to participate] in the research. Emotional reactions to returning results
They should have a good plan of returning results to The participants described mixed feelings on receiving 
motivate people to participate. FGD Males, Koro- their results. Some were pleased and said the results gave 
gocho, R1. them hope while others feared the results.
Where the return of results is not done, it will harm When you give the results to the participants, it 
future studies as people will not be willing to participate. gives them hope because once they know their status 
and then they are told it is not dangerous and they 
It will have a problem because the next time when will not have to incur unnecessary expenses. FGD 
you will need to come to carry out more research, Males, Korogocho, R1.
it helped you at first while taking the samples but if [It] is the fear of the unknown. It is like when you 
you come back to the community and they haven’t are told you will have the results of the exams out. 
known how the first one went. It will be [similar] You are the one who did that exam but you have the 
to [a situation] in school where learners [are] given fear, "might I have failed, or could I be a victim of the 
homework [but] the teacher does not mark it, [so] situation? IDI Community Leader 6, Viwandani.
the learners do not know whether they passed or 
not. The teacher [then assigns] them another assign-
ment [without telling] them how the first one went. Types of results to be returned
So, in a community, if people have not been given A majority of the participants advocated for individual 
the results of [previous] research, it will be difficult results and some wanted both individual and aggregate 
to give another sample for research because they will results returned to the community.
[inquire] about the first one [for which] they [have 
not yet received] the results yet and question the pos- I think both results are relevant to the community, 
sibility of receiving the results of the current one. IDI aggregate and individual results. Aggregate [results] 
Community Leader 1, Korogocho. will generally tell the community how they are fair-
ing; what is lacking in the community, what they 
need to improve on, it will be like an educative kind 
Relevance of information for self and others of result. FGD Research Team, AWI-Gen I, R1.
The majority of the AWI-Gen participants believe that I prefer returning results to individual participants 
receiving feedback impacts their health. Some felt it was to avoid the stigma associated with such diseases. So 
unimportant because they might already have the disease returning results to individuals is the best way that 
when returning the results. They believe that delayed is known between you and the doctor. FGD Women, 
results mean that they will not effectively track the dis- Korogocho, R7.
ease progression and make informed decisions around 
lifestyle adjustments. Privacy was cited as a reason some preferred aggregate results so that the community members do not find out 
I believe the results should be returned so that the who was among those found with a certain condition. 
community [can] understand what is going on and Some participants also misunderstood what it meant to 
Kisiangani et al. BMC Medical Ethics           (2022) 23:27 Page 6 of 11
return individual results. For some who preferred indi- their affairs to be known. FGD Males, Viwandani, 
vidual results, they misunderstood to think that individ- R10.
ual results would be publicised to the community so they By using posters, through the phone…. FGD Males, 
argued that results are specific to individuals and that Korogocho, R2.
it should not be returned to the community. They were …through newspaper reports FGD REC, R3.
concerned that information about their health status 
would become public due and they related it to the previ-
ous stigmatization of illnesses in the community. Timing of returning results
Study participants raised concerns about the time they 
When it comes to the [aggregate], in one way or the received their results. The majority of the participants 
other, people will not know anyone’s [status] as peo- felt that returning results took long and proposed that 
ple [will] not be able to tell whether who belong to the time be shortened in future research. Some want 
the 70% or 20% [group]. FGD Males, Korogocho, the results immediately while others felt that the results 
R1. should be returned within one year.
Individual [results] are best because you will know 
what you are suffering from and address it at an It takes a very long time before those who partici-
individual level. For instance, those with HIV face pated receive feedback, so [this] should be addressed 
a lot of stigmatization and you hear people saying so that in the future, after the research, feedback 
that "leave that person alone he/she has HIV.”But, if is given to the participants immediately…... FGD 
you know it individually, then it’s the best thing that Males, Korogocho, R1.
can happen to you. FGD Males, Korogocho, R5. Participants believed that receiving results immediately 
[It] is okay [to provide results] provided the names or within a year of the research would help them make 
of [those] afflicted is not made public. IDI Commu- decisions based on the findings shared. They noted that 
nity Leader 1, Korogocho. with prompt results, they would seek medical attention 
Some study participants noted that the aggregate promptly for the conditions they are diagnosed with. 
results would be informative to the community but they Others noted that their health status may deteriorate fur-
also felt that it needed to be followed up with some com- ther if the results are delayed. Others said the late return 
munity education in regards to what the next steps would of results makes the participants’ lose interest in the 
be for those diagnosed with conditions. results and they forget what the study was about.
[It] is okay provided the names of [those] afflicted It would be good if you came [back within a] year. 
is not made public. However, general percentages You know now how I was in the previous year is not 
for individual diseases is okay as it enlightens the the same way I will be this year. I will have suffered 
community members and it should be followed up because this problem is spreading. IDI AWI-Gen I 
by community education on what to do regarding Participant 2, Korogocho.
their various diagnosis. IDI Community Leader 1, …you know when someone gets tested, they are anx-
Korogocho. ious to know their results promptly and it keeps on 
disturbing them where they ask when the results 
will be returned so that they can know their health 
status. That enthusiasm exists but when you delay 
Methods of returning results
The community proposed several methods of return- returning the results, participants forget about them 
ing results. Some suggested methods that would ensure completely. When they forget and you return to 
confidentiality in returned results, such as using com- explain [the results], they won’t be able to remem-
munity health workers and mobile phones. Others pro- ber what the test was all about.. IDI Community 
posed using community gatherings, religious institutions Leader 7, Korogocho.
(Churches), chiefs, posters, and local newspapers. They thought that a genetic discovery would encour-
Use phone numbers to reach us… You can also use age people to be more vigilant in their preventive prac-
community health workers [because] they know tices, adopt healthier lifestyles or increase their chances 
how to maintain the confidentiality of participants of receiving better treatment for various diseases.
by coming to our place in person and finding us.….. If they can produce the results [on] the same day, it 
Through the church, chief, all those you can find would [be] better if they gave us the results before 
FGD Women, Korogocho, R3. leaving. Like for HIV tests, you get tested and receive 
Via mobile phone because some people don’t like the results the same day. For most blood tests, you get 
K isiangani et al. BMC Medical Ethics           (2022) 23:27 Page 7 of 11
the results the same day, so this should be the same The researchers should take their time to explain 
so that if you have an issue, you can start address- to us about the results. Then, as I said earlier, we 
ing it early enough. Most diseases are detected due should be invited as a group before we get individ-
to blood tests, so I would request them to make the ual results in a private room with the researcher. 
results available [on] the same day of the tests. Even This was the problem and you need to do this so 
if they don’t offer you treatment, they can inform that you don’t get that problem. FGD Women, 
you of what to do to control it and even seek medical Viwandani, R4.
care. FGD Males, Korogocho, R3. There’s confidentiality, so if the results are being 
returned on one on one level –to an individual des-
ignated participant, it should be private and confi-
Benefits of returning results dential. It should not pass through another person; 
The study participants felt that returning research results it should be directed to the respondent. But then if 
would help them make better health decisions for exam- they are aggregated, there should be no mentioning 
ple seeking medical care, changing their diet, etc. of the names of the participants who participated 
Receiving the results is a good idea because then you in the study. FGD Research Team, AWI-Gen I, 
will know your status and then seek medical care R4.
from anywhere… FGD Males, Korogocho, R6. Members of the research ethics committee felt that 
Cardiovascular diseases are lifestyle diseases while when disseminating results, the researchers needed to 
some of them are inherited. For the lifestyle, they will take precautions when disseminating sensational results 
know how to live healthily and leave certain behav- such as ethnic groupings. The information should not 
iours that predispose them to get risks of cardiovas- be in a manner that will cause undue anxiety and panic 
cular diseases like smoking, taking a lot of fats in among the study participants.
their food especially saturated fats, exercise; walk-
ing around, jogging, cycling. FGD Research Team, You will be able to identify ethnic groupings. You 
AWI-Gen I, R4. will need to disseminate this information in a way 
that the people will understand and I have said that 
it should be in such a way that does not cause any 
Understanding results anxiety or panic among the people. FGD REC, R5.
Study participants’ understanding of their results is key Let them [to] be told properly, in a way that they will 
for making informed decisions. not feel [anxious]. Or there is something that you 
have thrown to the family that will cause anxiety. 
So dissemination is a requirement that research- IDI AWI-Gen I participant 1, Korogocho.
ers must do and that is the challenge when you deal 
with complex subjects like genomics, to be able to 
bring it down to the level of the people’s understand-
ing…. FGD REC, R1. Challenges and solutions of feedbacking results
Is good because when one’s family gets to know that Given the complex nature of the medical reports, most 
either their mother or sister has a particular con- participants will fiind it difficult to interpret them.
dition, they will get her to the doctor and give the 
doctor a medical history so the doctor will know Challenges are sometimes in the interpretation of 
where to start from. IDI AWI-Gen I participant 2, results. If medical reports are involved that need to 
Viwandani. be interpreted, it can be a challenge [as] not every-one can interpret medical results. FGD Research 
Team, AWI-Gen I, R4.
Good ethical practices when returning results Some results may result in discrimination and stigma-
When returning research results to study participants, tization of the study participants especially if the results 
researchers should uphold good ethical practices. The are not conveyed in the right way.
study participants expect the researchers to explain the 
results to them. This should be done in a private room For example, suppose you discover a certain genome 
and confidentiality should be maintained at all times. sequence of sickle cell anaemia in a particular com-
Those found with a problem also need to be counselled. munity. When that gets out, as we have said it is 
In addition, in order to protect the identity of study par- important you learn how to package the results. [If 
ticipants, others felt that aggregated results should not not packaged well], it could result in stigma and dis-
contain identifiers. crimination issues FGD REC, R6.
Kisiangani et al. BMC Medical Ethics           (2022) 23:27 Page 8 of 11
If confidentiality and privacy are not adhered to, this participation in future research studies, 2) it is a sign of 
can negatively affect the study participants and their respect to study participants, and 3) study participants 
family members. In some cases, it can result in violence will know their health status and seek appropriate care. 
among family members. Some family members may start The major challenges with returning participants’ results 
dividing personal possessions among themselves. were the complex nature of medical reports, discrimina-
[If ] confidentiality and privacy are not adhered to, tion, stigmatization, denial of results, and lack of confi-
then it will negatively impact families and there dentiality and privacy. These findings contribute to the 
will be those who will not receive the news well. evidence on whether or not to return research results to 
Such kind of results can cause a lot of violence it research participants and their communities. The find-
is because of such kind of things [cause] shock. IDI ings will also inform the design and conduct of similar 
AWI-Gen I participant 2, Korogocho. studies on the return of results.
There could be because you know when the results Returning research findings provides value to the par-
come out and they find out that you are sick, they ticipants, community, and scientific stakeholders. Par-
start being sad, if you have wealth... they start divid- ticipants reported a strong preference for receiving 
ing [personal possessions] yet you’re not dead. Such research findings in which they had participated in and 
results are problematic. IDI Community Leader 8, have relevance to their health. The study findings are 
Korogocho. consistent with prior studies where participants want to receive findings that are significant to their health or 
Some participants were in denial, especially when the that of a loved one or are actionable [5, 16, 43–50] as this 
results did not favour their expectations. Some went to increases transparency in research and demonstrates 
the extent of seeking repeat tests in different health facili- researchers’ respect for their participation [16, 51]. This 
ties to validate the results while others experienced fear also builds trust between researchers and study partici-
of the unknown. pants. Researchers do not generally return research find-
ings at the participant and community level [2, 5, 16, 45, 
…..They would know their status but their stand is 52]. This has been witnessed in studies where research-
negative, they don’t want to be affected. So those are ers enter the communities, collect samples and data and 
the disadvantages of returning, because those who then leave without ever returning to their study sites to 
had a stand of negative results and it happens that inform participants of their findings leaving the relation-
they are positive, will be disturbed. They will be in ship between researchers and the communities strained 
denial. You can test them and even explain to them [53]. Currently, most research ethics committees (RECs) 
but they will refute it. They will say let me go else- institutions require researchers to engage the communi-
where so that I can get tested and have assurance…. ties before commencing and upon completion of studies 
IDI Community Leader 7, Korogocho. [23, 28, 54–58]. Due to the variability of research results 
The strategies proposed by participants to address the and the lack of reference information, participants should 
challenges included increasing the research participants’ be allowed to choose which results to receive during the 
and the general public’s awareness regarding the feed- consenting process [59, 60].
back of results. The return of results involves various types of data col-
lected using various methods tailored to the nature of 
The best way would be first to sensitize the par- the study. Research results are associated with a greater 
ticipants who participated in the research study…. degree of uncertainties at individual results compared to 
Inform them that [return of results took] long aggregated results due to incomplete scientific knowl-
because the samples were not being examined edge [61, 62]. In this study, some participants expressed 
[locally], they were being tested outside the country. a desire to receive individual results while others indi-
IDI Community Leader 1, Korogocho. cated their participation contributed to results and did 
not expect to receive individual results. This contrasts 
Discussion with several studies’ findings where most study partici-
This study sought to explore stakeholders’ perspectives pants favoured access to individual results even with no 
on returning genomic results at the participant and known clinical significance [44, 63]. However, there are 
community level in two Nairobi informal settlements concerns surrounding the return of research findings 
of Kenya. Findings were generally positive towards the due to the possibility of a negative impact on the partici-
return of results though cited challenges were regarding pant. In some cases, participants cited individual results 
how the return of results needs to be done. The posi- as a burden as they may cause emotional or other dis-
tives regarding the return of results were 1) it motivates tress, which is consistent with previous reports [22, 64]. 
K isiangani et al. BMC Medical Ethics           (2022) 23:27 Page 9 of 11
Generally, adaptation to this information by participants accomplishing the challenging task of accurately commu-
may motivate them to take the initiative to reduce health nicating both the individual level and aggregate research 
risks [65–67]. results. Researchers need to effectively enable partici-
Different communication modalities may be appro- pants to understand individual results and how to use 
priate in different contexts [68]. A variety of methods individual results. They should also caution against the 
are used to returning research results in studies with a overuse of individual results.
genetic basis of human diseases [69]. In-person discus-
sions, phone or video-conference based discussions, 
electronic delivery, and mailing of printed materials are AbbreviationsAWI-Gen: African Wits-International Network for Demographic Evaluation of 
all common methods of communicating results [68]. Population and Their Health (INDEPTH) partnership for Genomic Studies; CHV: 
Methods proposed to be used by researchers to return Community Health Volunteer; COREQ: Criteria for Reporting Qualitative; FGDs: 
results were through telephone, via mail, in person, and Focus group discussions; H3Africa: Human Heredity and Health in Africa; IDIs: In-depth Interviews; NUHDSS: Nairobi Urban Health and Demographic Surveil-
via referral to a physician. The choice of communication lance System; REC: Research Ethics Committee.
modalities of research results should be based on the 
results’ significance, risk level, and the available types of AcknowledgementsWe are grateful to the study participants who took the time to contribute 
intervention [16, 54]. to our research as well as the field research team who assisted with data 
Respondents from the current study stated that collection.
researchers need to consider communicating research Authors’ contributions
results appropriately for participants with varying needs, IK: Helped in writing the abstract, background, methodology, findings, 
resources, and backgrounds. This finding is consistent discussion, and conclusion, as well as draft and review the final manuscript. 
with prior studies where respondents recommended SFM: Contributed to writing the background, findings section, reviewing, and final manuscript drafting and review. CK: Designed the research on which 
the researchers provide context for the results they pro- the manuscript is based and reviewed the final product. PT: Contributed to 
vide [70, 71]. This requires skillful communication and reviewing the final manuscript. AG: Participate in the final manuscript review. 
improved language reduces potential misunderstand- MR: Contributed to reviewing the final manuscript. GA: Assisted with the con-ceptualization, interpretation of results, and writing of the final manuscript. All 
ings between the result conveyor and the study partici- authors read and approved the final manuscript.
pant [72–74]. Researchers should frequently use a genetic 
counsellor or a trained professional to communicate test FundingThe study was funded by the National Institutes of Health (NIH) – (USA) – 
results effectively and accurately [3, 75, 76]. They have under the Human Heredity and Health in Africa (H3A) Initiative, Grant No. 
a rich source of expertise and experience in explaining 5U54HG010275. NIH-USA had no role in the study design, data collection, 
complex information to individuals tailored to respect analysis, and decision to publish or preparation of the manuscript.
their cultural, religious, and ethnic beliefs [77–79]. Availability of data and materials
Given the complexity and uncertainty in genetic- The datasets generated and/or analysed during the current study are not 
related risk, it is difficult to communicate genomic publicly available due limitations of ethical approval involving participants data and anonymity but are available from the corresponding author on 
results particularly when it relates to something already reasonable request.
problematic in nature [61]. The value of genomic results 
to study participants can be either clinical or personal. Declarations
Results that are clinically actionable to guide preventive 
interventions or treatment should be returned. Presenta- Ethical approval and consent to participateThe African Population Health Research Center, AMREF (AMREF ESRC 
tion of genetic test results on individual characteristics P674/2019) and National Commission for Science, Technology, and Innovation 
may need greater tailoring especially when results are not (NACOSTI/P/19/1832/241483) ethics committees approved the research. The 
delivered in a clinical setting or by a trained healthcare researchers followed all ethical principles governing research involving human subjects. Participants were informed of their rights to voluntary participation, 
professional [80]. privacy, and confidentiality, as well as their ability to withdraw from the study 
anytime. We obtained informed consent in written format before the inter-
views. The participants were informed about all procedures, including the use 
Conclusion of recorders. Throughout the study, the data collected was kept confidential 
Although the return of individual results is not cur- and anonymized.
rently common in research studies, some investigators Consent for publication
are already returning research results to individual par- Not applicable.
ticipants [68]. The results in this study also highlight Competing interests
that there is little published on the return of research The authors declare that they have no competing interests.
results to individuals and communities thus research 
gaps remain that would better inform the development Author details1 African Population and Health Research Center (APHRC), P.O. Box 10787, 
of best practices and guidance for other types of research Nairobi 00100, Kenya. 2 School of Public Health, College of Health Sciences, 
results. Research teams would benefit from guidance on University of Ghana, Legon, Ghana. 3 Noguchi Memorial Institute for Medical 
Kisiangani et al. BMC Medical Ethics           (2022) 23:27 Page 10 of 11
Research, College of Health Sciences, University of Ghana, Legon, Ghana.  20. Rutakumwa R, de Vries J, Parker M, Tindana P, Mweemba O, Seeley J. What 
4 Sydney Brenner Institute for Molecular Bioscience, The University of Witwa- constitutes good ethical practice in genomic research in Africa? Perspec-
tersrand, The Mount, 9 Jubilee Rd, Parktown, Johannesburg 2193, South Africa. tives of participants in a genomic research study in Uganda. Glob Bioeth. 
2020;31(1):169–83.
Received: 17 March 2021   Accepted: 8 March 2022  21. Vaz M, Vaz M, Srinivasan K. The views of ethics committee members 
and medical researchers on the return of individual research results and 
incidental findings, ownership issues and benefit sharing in biobanking 
research in a South Indian city. Dev World Bioeth. 2018;18(4):321–30.
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