Are there differences in perceptions, preferences and attitudes
towards disclosure of genetic testing for Stroke? A qualitative
study among stroke-free SIREN-SIBS genomics study
participantsOyedunni Arulogun, aPhD, Michelle Nichols, bDrPH, Carolyn Jenkins, bDrPH,
Adekunle Gregory Fakunle, c,dPhD, Onoja Akpa, e,fPhD, Fred S. Sarfo, gPhD,
Albert Akpalu, hMBChB, Kolawole Wahab, iPhD, Reginald Obiako, jPhD,
Morenikeji Komolafe, k lMBBS, Lukman Owolabi, PhD,
Godwin O. Osaigbovo, mMBBS, Akinkunmi Paul Okekunle, c,nPhD,
Joshua Akinyemi, ePhD, Godwin Ogbole, oMBBS, Benedict Calys-Tagoe, hMPH,
Adeniji Adeleye, pMBBS, Yaw Mensah, gPhD, Osahon Jeffery Asowata, eMSc,
Abiodun M. Adeoye, cMSc, Lambert Appiah, gPhD, Arti Singh, gPhD,
Philip Adebayo, qMBBS, Donna Arnett, rPhD, Hemant K. Tiwari, sPhD,
Daniel Lackland, bDrPH, Philip Ibinaiye, jMD, Wisdom Oguike, jMSc,
Chimdinma Melikam, jBSc, Adeniyi Sunday, hBTech, Abiodun Bello, iMBBS,
Okechukwu Ogah, cPhD, Rufus Akinyemi, c,t,vPhD, Bruce Ovbiagele, uMD, and
Mayowa Owolabi, c,vDrM , on behalf of SIRENFrom the aDepartment
olina, South Carolina, US
State University, Osogbo,
Diseases, College of Med
Ghana; hDepartment of M
pital, Ilorin, Nigeria; jDep
Teaching Hospital, Ile-Ife
Jos, Nigeria; nDepartmen
Nigeria; pDepartment of M
Health, University of Ke
Research Unit, Institute fo
rosciences, University of C
dan, Nigeria.
Received September 21
Corresponding author
Center for Genomic and P
1052-3057/$ - see front
© 2023 Elsevier Inc. All
https://doi.org/10.101
Journal of Stroke and CerObjective: This study explored perceptions, preferences and attitudes towards
disclosure of genetic testing results for stroke among stroke-free controls (and
their family members) in the SIREN-SIBS Genomics Study, healthcare providers
and policymakers. Materials and Methods: We conducted a qualitative thematic
analysis of key informant interviews with 61 participants recruited from com-
munity advisory boards (30) and health care providers (31) across seven sites in
Nigeria and Ghana. Results: Major findings illustrate differences in the knowl-
edge of genetic testing with superior knowledge among health careof Health Promotion and Education, University of Ibadan, Nigeria; bCollege of Nursing, Medical University of South Car-
A; cDepartment of Medicine, College of Medicine, University of Ibadan, Nigeria; dDepartment of Public Health, Osun
Nigeria; eDepartment of Epidemiology and Medical Statistics, University of Ibadan, Nigeria; fInstitute of Cardiovascular
icine, University of Ibadan, Nigeria; gDepartment of Medicine, Kwame Nkrumah University of Science and Technology,
edicine, University of Ghana Medical School, Accra, Ghana; iDepartment of Medicine, University of Ilorin Teaching Hos-
artment of Medicine, Ahmadu Bello University, Zaria, Nigeria; kDepartment of Medicine, Obafemi Awolowo University
, Nigeria; lDepartment of Medicine, Aminu Kano Teaching Hospital, Kano, Nigeria; mJos University Teaching Hospital
t of Food and Nutrition, Seoul National University, Seoul, Korea; oDepartment of Radiology, University of Ibadan,
edicine, Federal Medical Centre, Abeokuta, Nigeria; qAga-Khan University Dar es Salaam, Tanzania; rCollege of Public
ntucky, USA; sThe University of Alabama at Birmingham, Birmingham, Alabama, USA; tNeuroscience and Ageing
r Advanced Medical Research and Training, College of Medicine, University of Ibadan, Nigeria; uWeill Institute for Neu-
alifornia San-Francisco, USA; and vCenter for Genomic and Precision Medicine, College of Medicine, University of Iba-
, 2022; revision received December 30, 2022; accepted January 4, 2023.
at: Mayowa O. Owolabi, MBBS, MD, DrM, FAAN, FANA, FRCP, FAMedS, FAS, FAAS, Department of Medicine and
recision Medicine, University of Ibadan, 200284, Ibadan, Nigeria. E-mail: mayowaowolabi@yahoo.com.
matter
rights reserved.
6/j.jstrokecerebrovasdis.2023.106978
ebrovascular Diseases, Vol. 32, No. 3 (March), 2023: 106978 1
2 O. ARULOGUN ET AL.professionals. Relatives and religious leaders were opined as the best to receive
the disclosure as they would be able to break the news to the patient in a cultur-
ally sensitive manner to reduce the likely resultant emotional outburst. Poor
level of awareness of national guidelines for disclosing genetic results exist. Key
facilitating factors for disclosure are education, enabling environment, involve-
ment of religious and community leaders, campaigns, and possible treatment
options. Disclosure inhibitors include inadequate information, fear of marital
break-up or family displacement, fear of stigmatization, fear of isolation, reli-
gious beliefs, health worker attitude, and lack of preparedness to accept results.
Conclusions: These necessitate culturally sensitive interventions for continuing
education, increased awareness and sustained engagement to equip all stake-
holders in genetic testing disclosure process.
Keywords: Genetic test disclosure—Perception—Preference—Attitudes
© 2023 Elsevier Inc. All rights reserved.Introduction
In the last few years, genomics studies have taken cen-
ter stage in the understanding of genetic interactions and
disease outcomes in the human body, these studies have
spurred great advancements in medicine and technology
revealing risk information in diseases such as stroke, heart
disease, cancer to mention a few such information should
help the patient/individual achieve better health out-
comes. Evidence in best practice for risk disclosure is
sparse.1, 2 A much deeper understanding of genetics test-
ing will shed light on more than just hereditary risks by
revealing the basic components of cells and, consequently,
examining how the various elements involved work
together to affect the human body in both health and dis-
ease, for both the medical professionals and the patient.3
For the patient, this understanding becomes impossible if
disclosure of genetic test is hampered by other unprece-
dented factors. Informed decisions cannot be made if atti-
tude towards and perception of disclosure are wrong. It
points to a far bigger issue; health outcomes might not
change. Healthcare professionals and policymakers in
Europe reportedly are struggling to find effective strate-
gies to communicate genetic risk information and, at the
same time, to enhance individual empowerment and
shared decision making in this field.4 A considerable
number of studies have investigated the level of knowl-
edge, attitudes, and ability to manage genetic information
among general practitioners5-9 and the interest of people
in genetic testing in many European countries.10-18 They
attempted to provide a global view of the general public’s
predisposition to consider and undergo genetic testing,
but studies to correlate these trends with specific psycho-
logical tendencies associated with health are sparse.19-21
In Sub-Saharan Africa, little is known about people’s per-
ception and attitude about genetic test result disclosure
and how this can push the adoption of the process. A dis-
ease such as stroke can have different outcomes through
genetic testing, but it is the attitude towards disclosure
that will determine if the test has any effect on the disease
outcomes. Perception and attitude towards disclosure ofgenetic test results for stroke may or may not be due to
individuals’ previous interaction with the disease.3 It is
important to emphasize that people have the right to
know the outcomes of their genetic testing and to decide
if they want this information shared with them. But the
question here is what will be individuals’ perception and
attitude towards disclosure among stroke-free individuals
where knowledge is limited. Furthermore, there is a pau-
city of literature in this field for studies conducted among
Sub-Saharan Africans. Consequently, there is the need to
investigate stroke-free individuals’ perception, preferen-
ces and attitudes towards disclosure of results of genetic
testing for stroke among SIREN-SIBS Genomics stroke-
free study participants (controls), their family members,
healthcare providers and policy makers, as these individ-
uals have not experienced first-hand a stroke at the time
of study participation and may have unique insight into
disclosure of genetic test results given their naïve personal
experience with stroke.Methodology
Design
We used a qualitative design using focus group discus-
sions to capture the variation in perceptions, preferences
and attitudes towards disclosure of genetic testing for
stroke which is well suited for exploring how attitudes
and opinions are formed and for researching sensitive
topics, as the setting among peers can create a safe and
encouraging environment for participants.22 The focus
group format allows subjects to express themselves in
their own vocabulary and elaborate on each other’s state-
ments through interactive dialogue.23 The method mini-
mizes the influence of the facilitator and is advisable in
settings where there is a gap between professionals and
target audiences or power differential between respond-
ents and decision-makers.24
Key informant interviews which are qualitative in-
depth interviews with persons who know what is going
on the community were used. The purpose was to collect
ARE THERE DIFFERENCES IN PERCEPTIONS, PREFERENCES AND ATTITUDES TOWARDS DISCLOSURE 3information from a wide range of people in this case
health care professionals and Community Advisory
Board (CAB) members who had first-hand knowledge
about the subject of inquiry. The key informant interview
guide allowed participants to express themselves in their
own vocabular. The study was approved by the Institu-
tional Review Boards of the participating institutions in
Nigeria and Ghana.Participant selection
Participants were recruited through non-probability
sampling from CAB members from seven project sites
in Nigeria and Ghana and health professionals involved
in management of stroke. The study sites have been pre-
viously described elsewhere.25 Healthcare provider
participants included primary care physicians/stroke
physicians/geneticists, social workers/ethical commit-
tee members, and nurses. Individuals identified by the
research team were approached with a request for par-
ticipation and information with contact details to the
research team was provided if needed. A time and date
were scheduled to suit the participants.Data collection
An interview guide was developed to capture a)
approaches to disclosure genetic test results; and b) per-
ceived facilitators and hindrances to result disclosure. The
guide had 8 questions based on literature review and
input from research team (Table 1). Prior to the inter-
views, study team members provided a brief overview of
the study and how genetic testing result can be disclosed,
specifically within the context of stroke. The interview
started with very broad statement on why participants
have been invited to reflect their opinions regarding
genetic testing and disclosure, and how they think the
results should be disclosed. The facilitator used probing
questions to elaborate and clarify statements if needed.
Towards the end of the sessions, the facilitator reiterated a
summary of the discussed topics to confirm the under-
standing. Interviews were held in a neutral meeting room
in office-like administrative premises at the participating
hospitals and homes/offices of CAB members. The dura-
tion of the interview ranged between 25 and 35 minutes
(median = 31 minutes). The interviews were held in
English language for the health care professionals and the
local language of the communities (Yoruba, Hausa, Akan
and Ga languages) for the CAB members in Nigeria and
Ghana. The main facilitator with experience in qualitative
methodology led all sessions assisted by a second col-
league who collected consent forms and managed the
audio equipment. Interviews were audio recorded, tran-
scribed verbatim, cross-validated with audio and anony-
mized. Incentives, in terms of transport fare, were used in
this study.Data analysis
The dataset was analyzed using qualitative thematic anal-
ysis. Transcripts were read several times to establish a sense
of the whole. The identified meaning units related to the
research objectives were condensed and descriptive codes
were applied. Related sub-categories were then grouped
and interpreted to form main categories. The objectives
were divided into themes extracted from the transcripts.
The themes were further developed into sub-themes and
codes.
Results
Demographic Information of studied participants
A total of 30 CAB members and 31 health care profes-
sionals from the SIREN sites in Nigeria and Ghana partici-
pated in the interviews (Table 2). The mean age of CAB
members (49.5 § 11.9 years) was slightly higher than the
health professionals (45.5 § 7.6 years), with a higher pro-
portion of males; 66.7% and 77.4%, respectively. Most of
the CAB members (73.3%) and health professionals
(74.2%) were married. The CAB consists of community
leaders (23.3%), community traders (20.0%), religious
leaders (20.0%), community nurses (20.0%), and media
representatives (16.7%), while the health care professio-
nals were made up of medical doctors with experience in
stroke care (51.6%), medical laboratory scientists (12.9%),
health services administrators (16.1%), public health edu-
cators and ethics committee members (9.7%).
Knowledge on genetic test and the types
Respondents had appreciable knowledge on genetic
testing, but healthcare providers had more extensive
knowledge of genetic testing compared with CAB mem-
bers. Several types of genetic tests were identified by both
healthcare providers and CAB members. Types of genetic
testing identified include: cytogenetics, genotype testing,
cancer oncogenes, short tandem repeat (SRT), karyotyp-
ing, trinuclear type repeat for stroke, and molecular
testing.
“. . .we do what is called karyotyping because we want
to know about the distribution of chromosomes in cer-
tain inherited diseases.” - Paediatrician, Ibadan
“If I am not mistaken when you talk about blood
group, genotype, I think those ones fall in line with
genetic test.”- Pastor, Abeokuta
“Stroke is one of the diseases that you can do a genetic
test, yes.” - Community Leader, AccraApproach to disclosure of genetic test result
When respondents were faced with who genetic test
results should be disclosed to, members of both groups
4 O. ARULOGUN ET AL.
Table 1. Key informant interview guides.
Domain Community advisory board Healthcare provider
Interviewee Q1. Please describe what your work is/what Q1. Can you describe what your work is/what
Practice you do. you do?
Q2. How often do you come in contact with Q2. How many patients who have had brain
people who have had brain related illnesses related illnesses do you see in a given
in your job? month?
Q2a. What is the average number of times
you see these patients in a given month?
Q3. How many years have you been a practi-
tioner for patients in this [Name of hospital]?
Approach to Disclosure Q1a. Please name and describe any genetic Q1a. Please name the genetic tests that you
of Genetic Test Results tests that you may have heard of. may order for your patients or that they
Q1b. Describe anything or any approach to receive from other physicians.
disclosure of genetic test results to individu- Q1b. Tell us about your current approach to
als. disclosure of genetic test results to patients in
Q2. Are you aware of any current national this hospital.
guideline recommendations for genetic test Q2. Are you aware of current national guide-
disclosure? If yes, are you aware of how they line recommendations for genetic test disclo-
are implemented? sure in your area of expertise? If yes, are you
Q3. What systems are currently in place for aware of how they are implemented at this
enhancing genetic testing and what are the [Name of hospital]?
capacities/resources available for genetic Q3. Are you aware of any systems currently
testing? in place at this [Name of hospital] for
Q4. In your estimation, what percentage of enhancing genetic testing?
people you know are aware of genetic testing Q4. If yes, what are the capacities/resources
and would be willing to undergo genetic available within the hospital for genetic test-
testing? ing?
Q5. In your estimation, what percentage of
patients that you encounter are aware of
genetic testing and would be willing to
undergo genetic testing?
Perceived barriers Q1. What do you think are barriers to disclo- Q1. What do you think are barriers to disclo-
and facilitators to sure of genetic test results among people sure of genetic test results among the patients
disclosure of within your community? you see?
genetic test results? Q2. What do you think are facilitators to dis- Q2. What do you think are facilitators to dis-
closure of genetic test results among people closure of genetic test results among the
within your community? patients you see?
Q3. What would you like to see happen or Q3. What would you like to see changed
change related to disclosure of genetic test related to genetic test results and why would
results and why would you like to see this you like the change?
change?
Action plans toward Q1. What actions would you recommend Q1. What actions would you recommend
practice of genetic testing related to sensitizing people about genetic related to sensitizing patients and caregivers
and disclosure of testing in your community? about genetic testing at this [Name of hospi-
genetic test results Q2. What action steps do you recommend for tal]?
disclosing genetic test results to persons and Q2. What action steps do you recommend for
their caregivers or significant other and who disclosing genetic test results to patients and
would you want to disclose the results? caregivers at this [Name of hospital] and who
Q3. Do you think people’s sensitization should disclose the results?
about genetic tests and the various methods Q3. Do you think patient and caregiver sensi-
of disclosing genetic test results could tization about genetic tests and the various
improve uptake and practice of genetic test- methods of disclosing genetic test results
ing? Please expatiate on your response. could improve uptake and practice of genetic
testing among patients?
Additional Comments Q1. What do you suggest should be done to Q1. What do you suggest should be done to
promote willingness towards the uptake of promote willingness towards the uptake of
ARE THERE DIFFERENCES IN PERCEPTIONS, PREFERENCES AND ATTITUDES TOWARDS DISCLOSURE 5
Table 1 (Continued)
Domain Community advisory board Healthcare provider
genetic testing among people in Ghana/ genetic testing among patients and caregivers
Nigeria? in Ghana/Nigeria?
Q2. What other information can you share Q2. What other information can you share
that you help providers, patients, caregivers, that you help providers, patients, caregivers,
and the community to better understand and and the community to better understand and
improve willingness to use genetic testing to improve willingness to use genetic testing to
improve health? improve health?
Table 2. Demographic characteristics of participants.
Demographics Variables CAB Health professionals
Frequency (%); Frequency (%);
N = 30 N = 31
Site Nigeria
Ibadan 4 (13.3%) 5 (16.1%)
Abeokuta 4 (13.3%) 4 (12.9%)
Ilorin 6 (20.0%) 5 (16.1%)
Zaria 5 (16.7%) 5 (16.1%)
Kano 3 (10.0%) 4 (12.9%)
Ghana
Accra 5 (16.7%) 5 (16.1%)
Kumasi 3 (10.0%) 3 (9.7%)
Age (mean § SD) years 49.5 § 11.9 45.5 § 7.6
Sex Male 20 (66.7%) 24 (77.4%)
Female 10 (33.3%) 7 (22.6%)
Educational status First degree 11 (36.7%) 2 (6.5%)
PDG 3 (10.0%) 0 (0.0%)
Master’s degree 9 (30.0%) 6 (19.4%)
PhD/Fellowship 7 (23.3%) 23 (74.2%)
Marital Status Never married 7 (23.3%) 7 (22.6%)
Married 22 (73.3%) 23 (74.2%)
Separated/Divorced 1 (3.3%) 0 (0.0%)
Widowed 0 (0.0%) 1 (3.2%)
Ethnicity Yoruba 18 (60.0%) 14 (45.2%)
Igbo 3 (10.0%) 2 (6.5%)
Hausa 4 (13.3%) 10 (32.2%)
Akan 1 (3.3%) 3 (9.7%)
Ga/Adangme 4 (13.3%) 2 (6.5%)
Profession Trader 6 (20.0%) -
Religious leader 6 (20.0%) -
Community leader 7 (23.3%) -
Journalist 5 (16.7%) -
Community Nurse 6 (20.0%) -
Health administrator - 5 (16.1%)
Medical laboratory Sci - 4 (12.9%)
Medical Doctors - 16 (51.6%)
Ethics committee member - 3 (9.7%)
Public Health Educator - 3 (9.7%)stated this would be the patient’s prerogative and health-
care members shared examples of how these preferences
are operationalized.
“... I think it is important that the person involved
should be the primary determinant of the disclosure of
the result”- Pastor, Zaria“We seek their consent first but the first contact is the
woman if she wishes or she does not wish the husband
to be around, we have to oblige her.” - Gynaecologist
Abeokuta
“If the patient wants the relative or any other person to
be close it is allowed. If the patient wants to be left
6 O. ARULOGUN ET AL.alone to hear the result alone, it is allowed. It depends
on whatever the patient wants we do.”- Community
Nurse, Zaria.
There were varying opinions regarding who results
should be shared with and whether others should be pres-
ent. Respondents in both groups unanimously agreed that
genetic test results could be disclosed to the patients’ fam-
ily members or spouses as this may prevent any potential
shock as the family members will be able to break it to the
patients softly.
“So, when it comes to the disclosure, I believe the team
lead would welcome the family and inform them that
the results are in and tell them what the results are and
ask them and explain the implication of the test
results.”- Pathologist Accra
Within both groups, some believed genetic test results
should be disclosed only to the patients or that this was
the practice within their facility.
“So that is how I feel you must disclose to the person
one on one in the best way that there will be no
chaos.”-Priest, Accra
“In this hospital, as far as I know, the results are well
communicated to the patients.” -Pathologist Abeokuta
When this same question was asked among members of
the community advisory board, some of the respondents
believed that genetic test results should be disclosed to
spiritual and traditional leaders, as this is a common route
for some healthcare needs, especially when clinical serv-
ices may be limited.
“Like I have said earlier on we have spiritual leaders
and we have traditional leaders and when there
are issues like this occur when we don’t have
medicine being practice fully, they go to spiritual
leaders or traditional leaders like herbalist”- Pastor,
IbadanWho should disclose it
Respondents had different opinions on who should dis-
close the genetic test results to the patients or family mem-
bers. Many believed the genetic test results should be
disclosed by the person who ordered the test, trained
health workers, spiritual leaders, experienced genetic
counsellors, or a group of professionals.
“I think the patients’ primary care giver because there
is a relationship or rapport at that point in time, so
releasing the results to an already established rapport
would be more comfortable for the patient to receive
the results.” - Senior Neurology Resident, Accra“So, the most experienced person in genetic counsel-
ling should do the disclosure.” - Paediatrician, Ibadan
“For the disclosure of the results I don’t think it should
be only one person who would do the disclosure. It
should be a team approach.”- Pathologist, Accra
“Well, most times, people believe in their spiritual
leader than their family because we have a way of
breaking news.”- Pastor, Ibadan.
Channels and modes of disclosure
Several channels of disclosure were proposed by the
respondents of the community advisory board via which
the genetic test results should be delivered to the patients.
Some of these modes of disclosure include texts, emails,
face-to-face, calls, and letters (enveloped safely). Some
modes of disclosure discussed included ensuring confi-
dentiality of results, obtaining prior consent, sharing
information directly and privately, following medical
ethics and protocols, incorporating counselling with ade-
quate information, and considering inclusion of faith-
based leaders.
“Directly through a text message or email that is
encrypted.” 
 Pastor, Ilorin
“The result will be enveloped and given to the person
concerned person.” - Lab Scientist, Zaria
First one, it should be quite confidential, the person
directly. You don’t have to send it through the commu-
nity head or somebody that the person knows; it
should be the person personally then it should be from
the doctor to the patient, no third party. - Journalist,
Zaria
It is faith-based [mode of disclosure]it is also going to
add some value and confidence in people.”- Imam,
Ilorin
“Disclose such with the assurance that the result is con-
fidential, not that this thing they are telling you is like
everybody already knows about it because that too
may affect people.” -Pathologist, Abeokuta
“Well, we counsel them, we counsel before and after.”-
Neurologist, Abeokuta
Awareness of current national guidelines
recommendations for genetic test disclosure
The majority of respondents in both groups were not
aware of any current national guidelines pertaining to dis-
closure. A number of respondents who work in health
institutions were not aware of any guidelines for genetic
disclosure.
ARE THERE DIFFERENCES IN PERCEPTIONS, PREFERENCES AND ATTITUDES TOWARDS DISCLOSURE 7“No, not aware of any current or national guideline
recommended for genetic test disclosure, whether
local, state or national, we use the guide we receive
during training at the school.”- Community Nurse,
Kano
“I don’t think we have a standard approach, am not
aware of, like an institutional approach.”- Neurologist,
Ibadan
“I am not aware of any guideline for the disclosure of
genetic test.”- Community Leader, KanoSystems and resources available for genetic testing
Respondents mentioned several systems and resour-
ces available for genetic testing. These include tertiary
hospitals, testing centres, community advisory boards,
stroke units, ethics committees, and research studies.
Both groups also listed infrastructure type resources
as testing equipment, finances, electricity, research
institutes, storing facilities, and genetic units in hospi-
tals, manpower, collaborations, necessary for genetic
testing.
“It is just like having ethics committee so which is very
necessary.”- Imam, Ibadan
“Community Advisory Board, in collaboration with
the stroke unit. . .; they did a lot of work in that arena
just to make sure that people are educated and those
that needs to go through the test.”- Community
Leader, Accra
“Then secondly, electricity. We can’t remove that away
from it. If there is no light, how will you refrigerate
it.”- Teacher, Ibadan
“The system currently in place for enhancing genetic
testing are the equipment, i.e., the laboratories,
machines, and the staff in the health facility to carry
out tests.” - Community Nurse, Kano
“We have small vial repository where we are able to
preserve samples before they are moved to the testing
sit.” -Medical Microbiologist, AbeokutaWillingness to undergo genetic testing
Respondents unanimously agreed that the estimated
number of people aware of genetic testing is low to very
low. Willingness to undergo genetic testing received
lower estimations. An example of this was where a
pathologist from Accra reporting this willingness to be
about 20%.Factors related to disclosure of genetic test results
Barriers to disclosure
The participants enumerated some factors that might
hinder the disclosure of genetic test results. These barriers
were either from the patients or the health care provider.
The factors that might be barriers highlighted by members
of the community advisory board include inadequate
information, lack of interest, ignorance, fear of marital
break-up or family displacement, fear of stigmatization,
fear of discrimination, fear of isolation, distance to testing
facility, cost, lack of privacy, sociocultural beliefs, envi-
ronmental factors, misconceptions, religious beliefs,
health worker attitude, language barrier, time, readiness
to accept results. Exemplary responses that corroborate
these concepts are included in Table 3. Most barriers enu-
merated by the community advisory board were in line
with those highlighted by the health care providers, some
more barriers by the health care providers include poor
training of health personnel and loss of patient’s contact
(Table 3).Facilitators to disclosure
Participants identified factors that might facilitate
genetic testing disclosure. These included clear guidance
and legislation, having trained healthcare personnel and
availability of genetic counsellors, use of a multidisciplin-
ary approach, ensuring a private, comfortable environ-
ment for discussions, involvement of religious and
community leaders, educational information, including
possible treatment options, and confidence in medical
personnel. CAB and healthcare team member exemplary
quotes pertaining to facilitators of disclosure are noted
within Table 3.Suggestions on improving disclosure of genetic test
Respondents were asked what they would suggest in
relation to sensitizing people about genetic testing, uptake
and practice of genetic test disclosure, promoting willing-
ness to undergo genetic testing and recommended
changes related. These suggestions represent the percep-
tion of the respondents on how genetic testing should oth-
erwise be carried out and disclosed. Suggestions from the
CAB members towards improving uptake and practice of
disclosing genetic test results include reducing cost of test,
creating awareness, instituting infrastructures, freedom of
expression, fighting against stigma, community cam-
paigns, health workers’ orientation, use of modern testing
techniques, and provision of adequate information to
patients. Participants responses to recommended changes
related to disclosure of stroke genetic test results includes
8 O. ARULOGUN ET AL.
Table 3. Exemplary quotes pertaining to disclosure of genetic test results.
Topics Community advisory board Healthcare providers/team members
Barriers Poor knowledge of people on what genetic test is the There are lots of barriers; fear of family displacement,
major barrier, talk less of disclosing the results for the breakup increase in marriages and divorce by hus-
test. -Imam, Kano bands and wives. -Community Nurse, Kano
I think people feel it is not something they should really Distance to testing facility. The distance, take for
do so that makes it difficult. 
 Journalist, Zaria. instance someone from maybe a rural area or what-
I think discrimination and people think that I won’t get ever, you now ask such person to go and collect result
a husband or wife to marry if people know that these from UCH [hospital in Ibadan]. - Public Health Nurse,
run in the family. - Health Services Administrator, Abeokuta.
Accra HS Admin., Accra One of the barriers is that they have low understanding
Is cost intensive that people would think I don’t have [ignorance]- Nurse, Ilorin.
the money and that’s also a barrier. -Health Services The readiness to accept result- readiness in the sense
Administrator, Accra. that even though you are telling the person that you
Ignorance of the people on what genetic testing is the have it and person keep telling you that I don’t have it
main barrier. - Community Leader, Kano. and the result now comes out and the person have it
But in Africa, you know we are the kind of people that the fear of disclosing the result because the person will
are very selective, once they know something, once not accept the result. 
 Public Health Nurse, Ibadan.
they know you have a problem, it is going to be a talk Something that will impede people from, impede the
on the town. People won’t want to move closer to you. health worker from disclosing to the patient, like loss
- Pastor, Ibadan of contact. - Health Educator, Ilorin
At the same time, naturally as Muslim and Muslim One is lack of proper training and I think if people
scholar for that matter, we always look unto issues have not been properly trained on how to disclose
through Islamic juridentic way. How unlawful Muslim information that may evoke negative reactions by the
to subject himself or herself to that type of exercise, so hearers then that can be a problem. -Pathologist,
it is a kind of an issue that we have been looking at. - Accra
Imam, Ibadan Well given the culture we have and our cultural back-
Another thing that I can see is an obstacle to disclo- ground, one of the barrier is that people don’t want to
sure of genetic test is the environmental circumstances. do anything to their health, many prefer to die than to
Let me just put it that way, where a lot of people are know information about their health even if it is pre-
living, they may not even believe that such a thing is ventive, they don’t want to hear that anything is wrong
existing, at least those people that are living in rural with them until it happens and they take it as their own
area now. - Engineer, Ibadan. faith. - Nurse Health Educator, Abeokuta
The way some medical workers like nurses, and some
medical doctors too, the way they voice their mind on
issues is derogatory to such issues to be accepted by
ordinary person. - Imam, Ibadan.
One of the barriers is the language. - Imam, Ilorin.
Facilitators Legislation and then national framework or established That ideally it should be a multi-disciplinary event
systems that would buy into the necessity of this condi- because you need to talk about the consequence of
tion and then by virtue of that facilitate the provision of what you want to do particularly when what you want
legislation, adequate resources. - Islamic Leader, to disclose is something that is palatable to the client,
Accra so you need some other expertise like multi-disciplin-
I think there needs to be an enlightenment campaign, ary approach. 
 Pediatrician, Ibadan
advertisement that give people an idea on what it What I think is that in any disclosure of any result, you
means and how beneficial it is to society. - Pastor, have to create a very enabling environment. -Nurse,
Zaria. Ilorin.
Availability of testing facilities. When people have You do a type of rapport in between you and your cli-
access to doing it on their own without being coerced, ent. - Nurse, Ilorin
readily when they have some symptoms, they can read- The education background of the client, studies have
ily go to the facility and say please check this things, those that are well educated will want to do certain
me I want to know my status, and by the time they procedure investigation because of their background
know, because they are the ones that volunteered, as educated person whereas those that are below aver-
without any coerce to approach for testing, so disclo- age in term of education that could also be an impedi-
sure will not be.- Imam, Ilorin ment to them. -Nurse Health Educator, Abeokuta
What I know is that once patients get the confidence of
the doctor, you know, when they get the confidence of
the doctor, and they know the doctor is really after
ARE THERE DIFFERENCES IN PERCEPTIONS, PREFERENCES AND ATTITUDES TOWARDS DISCLOSURE 9
Table 3 (Continued)
Topics Community advisory board Healthcare providers/team members
their condition, there is no level that they cannot go in
cooperating with whatever you want to do with them.

 Pathologist, Ilorin
The only thing I will say is training, that is all, the
more people have been trained in genetic counselling,
it will go a long way to facilitate the disclosure of
genetic test result. -Medical Microbiologist, Abeokuta
Religious leaders can also be helpful in communicat-
ing this, even targeting churches, mosques and other
places of worship to let people see the need for genetic
testing - Neurologist, Ilorin
Suggestions All the medical workers should be properly oriented; Empathy should be shown when disclosing the results.
they should always mind their language when dealing -Neurologist, Kano
with uninformed people. They shouldn’t be that care- I think possibly what I would look forward to see is an
less in passing negative comment regarding genetic improve turnaround time in terms of ensuring that this
researches. - Imam, Ibadan result come out on time and having more of this avail-
Creating good awareness campaign among the com- able around. -Pathologist, Abeokuta
munity members on health issues.- Community Leader, We need an enabling framework, we need a legal
Kano backing, we need more awareness. -Neurologist, Abeo-
We will first of all understudy who and who will be our kuta
gate keeper, that is number one, then after identifying I will recommend that there should be national or
them, they are the first people to be sensitized and con- worldwide education and we should have people to
vince their acceptance of the mission. - Imam, Ibadan advertise this on national television, radio so that most
Also, there should be a network of collaboration people would be aware of it. - Community Health
between state agencies like NCCE, Ministry of Health Nurse, Accra
and Ghana Health Service in order to come down to
the community to create these awareness.- Islamic
Leader, Accra
Peer influence too and the social grouping to be capi-
talized upon because they often get influenced by
friends and socio group. - Imam, Ibadan.empathy, timeliness of result, disclosure of results by my
managing physician, awareness, family involvement,
availability of electronic results to clients, and to train
health worker in local dialect.
Participant perceptions on how to sensitize people
about genetic testing were identification and sensitization
of community gate keepers, provision of free testing, testi-
mony from experienced, advocacy, campaigns, training
by professionals, use of religious gathering, financial
incentives, use of social and peer groups, use of local lan-
guages, continuous education, follow up, involvement of
community leaders, institution of a health committee,
training of health educators, mass media education. Sug-
gestions for enhancing disclosure of results from genetic
testing from both community advisory board and health-
care team members are highlighted in Table 3.Discussion and conclusions
This report outlined the instinctive perceptions, prefer-
ences, and attitudes towards disclosure of genetic testingresults among community advisory board members and
health care professionals with a total of 61 participants.
Both lay CAB members and healthcare team respondents
noted similarities across barriers and facilitators of disclo-
sure of genetic test results. Key factors for both groups
included the lack of awareness or knowledge about
genetic testing, the need for respecting individual and cul-
tural preferences, through inclusion of family members or
faith leaders in discussions, and recommendations for
expanded oversight or legislation on genetic testing and
increased education for all. While both groups
highlighted the need to respect individual and cultural
values, our findings noted variation between groups on
who they felt should be included in discussions surround-
ing disclosure of genetic test results. Many of our partici-
pants felt strongly that spiritual and traditional leaders
should be part of the discussion group. According to
Akpinar and Ersoy,26 issues such as that of privacy and
confidentiality may arise during disclosure of genetic test
results. Our results illustrate the disclosure dilemmas and
highlight suggestions for improving the intention to
10 O. ARULOGUN ET AL.disclose in a culturally sensitive way, which was a recom-
mendation in a systematic review conducted by Vears et
al.27
Our data corroborate previous findings that people
indeed let quality and type of relationship govern atti-
tudes and disclosure preferences. Limiting one’s own per-
ceived duty to inform only selected individuals could be
interpreted as a compromise to escape the discomfort of
conflicting moral duties, i.e., the duty to warn and the
duty to protect from harm.28 In a study by Hawranek,
Hajdarevic and Rosen29 participants raised concern about
informing relatives and felt it was unnecessary to cause
unrest by creating a scare of disease in the relatives. It is
important to note that the preference to inform only
selected relatives did not imply that our respondents
wanted to relinquish the responsibility of risk disclosure
altogether. The question was not about selecting one or
the other mode of disclosure as the optimal approach but
rather using a mix of both family-mediated, religion-
mediated and healthcare-mediated disclosure efforts,
preferably with healthcare taking the main responsibility.
The findings show that background factors may predict
attitudes about genetic information and intention to dis-
close. The impact of religiosity on disclosure is strong in
this study as strong religious beliefs in Sub-Saharan Africa
are associated with intention to inform relatives, which
was not noted as heavily in similar research conducted in
other geographic areas.
Our findings regarding the correlation between level of
education, enabling environment, involvement of reli-
gious and community leaders, campaigns, and possible
treatment options and intention to disclose are important
considering the paucity of studies on the subject. Accord-
ing to Gilbar et al,28 a high level of education will increase
patient’s acceptance and understanding of genetic test
result disclosure and its implications on their health. A
recent study indicates that higher education may predict
a lower level of disclosure to relatives.30 Furthermore, a
better understanding of expectations between patients,
healthcare and relatives, and a more collaborative
approach towards disclosure might be a way forward in
improving practice of disclosure of genetic results. Also,
the findings provide justification for an evaluation of
genetic testing disclosure that includes the patient in the
decision making of the disclosure process.Practice Implications
Our findings have important implications for clinicians
in genetic counselling. Our study shows that personal,
social and demographic characteristics affect attitudes
towards disclosure to relatives. This may require clini-
cians to shape the encounters based on the patient’s par-
ticular characteristics and discern the attitude of the
patient to disclosure. Furthermore, our finding could
shape the development of disclosure model that factors inthat influence the perception, disclosure, reception of
genetic testing for stroke. Such model may be scalable to
other healthcare conditions in the African setting.Ethical approval
All procedures performed in studies involving human
participants were in accordance with the ethical standards
of the institutional and/or national research committee
and with the 1964 Helsinki declaration and its later
amendments or comparable ethical standards.Informed consent
Informed consent was obtained from all individual par-
ticipants included in the study prior to engaging in study
activities.Animal studies
No animal studies were carried out by the authors for
this article.Declaration of Competing Interest
The authors declare that they have no conflict of inter-
est.Acknowledgments: Our work is supported by The
National Institutes of Health grants: SIREN (U54HG007479),
SIBS Genomics (R01NS107900), SIBS Gen-Gen
(R01NS10790002S1), African Neurobiobankfor Precision
Stroke Medicine ELSI Project (U01HG010273), ARISES
(R01NS115944
01), H3Africa CVD Supplement
(3U24HG009780
03S5), CaNVAS (1R01NS114045-01), Sub-
Saharan Africa Conference on Stroke (SSACS)
1R13NS115395-01A1 Training Africans to Lead and Execute
Neurological Trials & Studies (TALENTS) D43TW012030
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