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Exploring key stakeholders’ perspectives on effective community engagement strategies to facilitate reporting aggregate genomic results to groups and communities:The Kenya Case study, CEBioGEN

Kenya, 2019 - 2020
Health and Well-Being (HaW)
Catherine Kyobutungi, PhD, Dr. Anita Ghansah, PhD
Last modified August 28, 2025 Page views 234 Metadata DDI/XML JSON

Identification

IDNO
DDI-KEN-APHRC-CEBioGEN-2019-V1.0
Title
Exploring key stakeholders’ perspectives on effective community engagement strategies to facilitate reporting aggregate genomic results to groups and communities:The Kenya Case study, CEBioGEN
Subtitle
CEBioGEN
Country
Name Country code
Kenya KEN
Abstract
Community engagement (CE) has gained prominence as an important ethical practice, for conducting genomic studies and bio-banking, particularly in Africa context. However, determining the effectiveness of CE strategies in supporting broad sharing of data and samples and the return of both individual genetic findings and aggregate genomic results to communities and groups remain a challenge. The overall goals of the Community Engagement in Biobanks and Genomics (CEBioGen) Collaborative Centre are to address this knowledge gap in CE and to build the capacity of a critical cadre of ethics and community engagement practitioners who can support the implementation of genomic and biobanking projects in the African continent. The Africa Wits-INDEPTH partnership for Genomic Community Engagement (AWI-GenCE) study (i) elicited key stakeholders' views on the value and purpose of CE in genomics, (ii) identifed the core competencies that are required for best CE practices, (iii) examine the key ways in which local communities should be involved in genomics and biobanking in Africa and (iv) which African moral theory should underpin CE in Africa. The findings from this study also feed into further development of several H3Africa guidelines and policies on consent, CE and feedback of findings. The study employed a mixed social science methodology to address the study research questions. In Kenya we conducted this study in three phases over a period of four years. This study budget is $19,008 for one year.

Version

Version Date
2024-11-21
Version Notes
N/A

Coverage

Geographic Coverage
County Coverage (Nairobi County/Informal settlements of Korogocho and Viwandani)
Unit of Analysis
Key Community stakeholders
Universe
The survey covered sampled key community stakeholders

Producers and sponsors

Authoring entity/Primary investigators
Agency Name Affiliation
Catherine Kyobutungi, PhD APHRC
Dr. Anita Ghansah, PhD University of Ghana
Producers
Name Affiliation Role
Gershim Asiki, PhD APHRC CO-Investigator
Shukri Mohamed, MPH APHRC Kenya Site Study Coordinator
Isaac Kisiangani, MPH APHRC Kenya Site Research Officer
Dr. Pauline Tindana, PhD University of Ghana – Ghana Overall Study Manager
Funding Agency/Sponsor
Name Abbreviation Role
National Institutes of Health (NIH) - (USA) - under the Human Heredity and Health in Africa (H3A) Initiative NIH Funder
Other Identifications/Acknowledgments
Name Affiliation Role
Joy Chepkemboi African Population and Health Research Center Data Documentation Officer
Bonface Ingumba African Population and Health Research Center Data Governance Officer

Sampling

Sampling Procedure
Study Design and Sampling Strategy a) Study design: Employed a mixed social science methodology to address our research questions. Drawing insights from Creswell's interpretation of pragmatism, adopted this approach for this study. In this approach, individual researchers have a "freedom of choice and are free to choose the methods, techniques, and procedures of research that best meet their needs and purposes" (28,29). This included qualitative study that utilized in-depth interviews (IDIs), focus group discussions (FGDs) and deliberative workshops and interviewing of various key stakeholders including members of research ethics committees, genomic researchers, community gatekeepers, fieldworkers and community facilitators. The quantitative strategies involved simultaneous or sequential collection of both numerical and textual information to best understand the research problem. The quantitative arm tested the general acceptabilityof various of the various CE methods feedback. b) Study site (geographical) The study in Kenya was conducted in Nairobi, specifically in Korogocho and Viwandani urban informal settlements whose populations have been under surveillance since 2003 as part of the Nairobi Urban Health and Demographic Surveillance System (NUHDSS) project. c) Sampling The AWI-Gen study collected data and DNA samples from 2006 individuals, aged between 40 and 60 years from 2014-2016. We first approached 56 of these participants, 20 of these were involved in IDIs, while 36 were involved in FGDs. Interviews continued until we either contacted all 56 individuals or reached saturation. We obtained the contact information of those who refused participation from the AWI-Gen research team. Depending on the numbers involved, we purposively approached all (if they are less than 10-15 people) or randomly approach a percentage of them until we have reached 10-15 people or a point of saturation. The 56 participants, who reside in the NUDSS sites, will be traced using phone calls (their phone numbers were documented during AWI-Gen I) and by visiting their structure with help of community health volunteers (CHVs). We also conducted IDIs with these individuals who declined to participate in the AWI-Gen study.
Deviations from the Sample Design
N/A
Response Rate
N/A
Weighting
N/A

Data Collection

Dates of Data Collection (YYYY/MM/DD)
Start date End date
2019-11-11 2020-02-27
Mode of data collection
Face-to-face [f2f]
Supervision
Interviewing was conducted by two interviewers. All coordinated field data collection activities. Additionally, they maintained field control documents, and sent recordings and field notes to the central office.
Type of Research Instrument
The study used questionnaires targeting community members, fieldworkers, study coordinators, and ethics committee members. These questionnaires was developed in English and translated into Kiswahili. The design was based on previous similar studies and standard models, with stakeholder input to ensure cultural appropriateness. Stakeholders' feedback was incorporated into the final version, and any testing or revision reports were provided as External Resources. Pre-testing was also conducted to refine the tools before full implementation.

Data Processing

Cleaning Operations
N/A
Other Processing
N/A

Data Appraisal

Estimates of Sampling Error
N/A

Data access

Contact
Name Affiliation Email URI
African Population and Health Research Centre APHRC datarequests@aphrc.org http://www.aphrc.org/
Conditions
Conditions
APHRC data access condition
All non-APHRC staff seeking to use data generated at the Center must obtain written approval to use the data from the Director of Research. This form is developed to assess applications for data use and facilitate responsible sharing of data with external partners/ collaborators/researchers. By entering into this agreement, the undersigned agrees to use these data only for the purpose for which they were obtained and to abide by the conditions outlined below:

1.Data Ownership:
The data remain the property of APHRC; any unauthorized reproduction and sharing of the data is strictly prohibited. The user will, therefore, not release nor permit others to use or release the data to any other person without the written authorization from the Center.

2.Purpose:
The provided data must be used for the purpose specified in the Data Request Form; any other use not specified in the form must receive additional or separate authorization.

3.Respondent Identifiers:
The Center is committed to protecting the identity of the respondents who provide information in its research. All analytical data sets (both qualitative and quantitative) released by the Data Unit MUST are stripped of respondent identifiers to protect the identity of the respondents. By accepting to use APHRC data, the user is pledging that he/she will not, under any circumstance, regenerate the identifiers or permit others to use the data to learn the identity of any individual, household or community included in any data set.

4.Confidentiality pledge:
The user will not use nor permit others to use the data to report any information in the data sets that could identify, directly or by inference, individuals or households.

5.Reporting of errors or inconsistencies:
The user will promptly notify the Head of the Statistics and Survey Unit any errors discovered in the data as soon as the errors are discovered.

6.Publications resulting from APHRC data:
The Center requires external collaborators to work with APHRC staff on all publications resulting from its data. In order to facilitate this, lead authors should send a detailed concept note of the paper (including the background, rationale, data, analytical methods, and preliminary findings) to the Principle Investigator (or Theme Leader) for the project (with a copy to the Director of Research), who will circulate the abstract to concerned researchers for possible expression of interest in participating in the publication as co-authors. Any exception to the involvement of APHRC staff should be approved by the Director of Research, APHRC.

7.Security:
The user will take responsibility for the security of the data by ensuring that the data are used and stored in a secure environment where access is password protected. This will ensure that non-authorized people should not have access to the data.

8.Loss of privilege to use data:
In the event that APHRC determines that the data user is in violation of the conditions for using the data, or if the user wishes to cancel this agreement, the user will destroy the data files provided to him/her. APHRC retains the right to revoke this agreement or informs publishers to withhold publication of any work based wholly or in part on its data if the conditions for using the data are violated.

9.Acknowledgement:
Any work/reports from this data must acknowledge APHRC as the source of these data. For example, the suggested acknowledgement for NUHDSS data is: "This research uses livelihoods data collected under the longitudinal Nairobi Urban Health and Demographic Surveillance System (NUHDSS) since 2006. The NUHDSS is carried out by the African Population and Health Research Center in two slums settlements (Korogocho and Viwandani) in Nairobi City."Additionally all funders, the study communities that provided the data, and staff who collected and analyzed or processed the data should be acknowledged.

10.Deposit of Reports/Papers:
The user should submit electronic and paper copies of all publications generated using APHRC data to the Policy Engagement and Communications Department, with copies to the Director of Research.

11.Change of contact details:
Citation requirement
Use of the dataset must be acknowledged using a citation which would include:
- the Identification of the Primary Investigator
- the title of the survey (including country, acronym and year of implementation)
- the survey reference number
- the source and date of download

Metadata production

Document ID
DDI-KEN-APHRC-CEBioGEN-2019-V1.0
Producers
Name Abbreviation Role
African Population and Health Research Center APHRC Documentation of the DDI
Date of Production
2024-11-21
Document version
Version 1.0 (November 2024)