About the Project

The Bridging Gaps in the ELSI of Data Science Research (BridgELSI) Project is a collaborative research ethics study and training project that is focused on bridging the gaps in current governance framework on ethical oversight of data science health research by engaging key stakeholders to evaluate and co-develop novel governance framework for the Ethical Legal and Social Implications (ELSI) of data science health research in Nigeria. The project will implement short and medium-term training on ethics of data science for data scientists, ethicists and ethics committees, and strengthen the ethical working environment for data science health research in Nigeria. 

The project brings together talented and highly productive researchers at the Center for Bioethics and Research (CBR), Nigeria, George Washington University, DC and University of Maryland School of Medicine (UMSOM), USA. BridgELSI is funded by the National Institute of Health (NIH) Award Number 1U01MH127693-01, as part of the recently launched DS-I Africa sponsored projects.

The Objectives

1

Evaluate current governance frameworks for data science health research in Nigeria and work with key stakeholders to co-develop novel governance frameworks

  • Aggregate and analyze current frameworks for oversight of data science health research in Nigeria;
  • Conduct Key Informant Interviews (KII) of stakeholders on their knowledge and perceived efficacy of current governance framework and their ideas on novel governance framework for the protection of participants in data science health research in Nigeria;  
  • Develop a novel model ethical governance framework for data science health research in Nigeria which is portable to other African countries with similar legal systems;

 

 

2

Survey the knowledge, attitude, and practices (KAP) of key stakeholders to current and emerging ELSI of data science health research in Nigeria.

Methodology

Qualitative and quantitative research methods are adopted for the study. We will content-analyze laws, guidelines, policies and frameworks on current and emerging data science health research in Nigeria. Also, semi-structured KII guidelines will be developed and used to collect needed data from stakeholders in the study. In addition, one-way ANOVA, Wilcoxon rank sum, Fisher’s exact, 𝜒2 tests, and multivariable logistic regression analysis will be conducted to analyze quantitative data in the study at p-value of 0.05.

Ongoing Activities

Specific Aim 1a.

Aggregation and analysis of current frameworks for oversight of data science health research in Nigeria

The legal team is examining laws, policies, guidelines, and frameworks relevant to all aspects of ethical conduct of data science health research in Nigeria, including the collection, storage, manipulation, analysis, and generation of results/reports from conventional and non-conventional data and their combination. The team will analyze these various laws, policies, guidelines, and frameworks to identify their authorities, weights, and jurisdictions. The team is doing this to determine whether these instruments effectively cover ongoing and emerging ELSI of data science health research in Nigeria.

Legal Scholars

  1. Professor Simisola Akintola
  2. Professor Shawneequa Callier
  3. Dr Oluchi Maduka
  4. Miss Jennifer Kukucka

Specific Aim 1b.

Key Informant Interviews (KII)

Expert Team

  1. Professor Clement Adebamowo
  2. Professor Ayodele Jegede
  3. Dr Sally Adebamowo
  4. Mr Adeola Akintola

After reviewing the legal team’s findings, the KII team is conducting an evaluation of stakeholders’ knowledge and perceptions of the effectiveness of the current governance framework as well as their recommendations for a novel governance framework for the protection of participants in data science health research in Nigeria.

The study sample includes representatives of stakeholders in data science health research in Nigeria:

  1. Researchers involved in data science projects in Nigeria.
  2. Members of ethics committees of institutions hosting DS-I Africa project(s) in Nigeria.
  3. Officials of Ministries of Health, Justice, Communication, Science and Technology and Education in Nigeria.
  4. Key stakeholders in Nigeria data science private sector.
  5. Key Opinion Leaders (KOL) on data science, health research and IT in Nigeria.

Specific Aim 1c.

Developing a novel governance framework for Data Science Health Research

A working group will be formed from the stakeholders who participated in the KII. We will use the Modified Delphi Technique to engage this working group in developing a novel governance framework for data science health research in Nigeria. The novel guideline will be presented to the National Health Research Ethics Committee for adoption and implementation. The working group will continue to exist because we expect increased awareness in the coming years and throughout the project’s duration.

Experts

  1. Professor Simisola Akintola
  2. Professor Shawneequa Callier                
  3. Professor Clement Adebamowo
  4. Professor Temidayo Ogundiran
  5. Dr. Oluchi Maduka
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