JMIR Publications

ABSTRACT

Background:

Data science health research is a novel research approach that is creating new challenges for ethical oversight.

Objective:

To explore knowledge, attitudes, and perspectives regarding the ethical oversight of data science health research (DSHR) and gather recommendations for development of a novel ethical oversight framework.

Methods:

A qualitative study employing Key Informant Interviews (KIIs) of key stakeholders in Nigeria. Participants were identified through program lists, publication databases, and direct contact with relevant organizations. Semi-structured KII guides explored awareness of policies, ethical, legal, and social issues (ELSI) related to DSHR, experiences, and components of an ideal oversight framework. Demographic data and information on ethics training were collected. Qualitative data from KIIs are planned for content analysis. Descriptive statistics were used for quantitative data.

Results:

Of the 65 participants, the mean (SD) age was 47.9 (7.9) years, and 76.9% (50/65) were male. A majority (58.5%, 38/65) held doctoral degrees. While 76.9% (50/65) had received general research ethics training, only 12.3% (8/65) reported training in the ethics of DSHR. Notably, 92.3% (60/65) of participants agreed on the need for specific training in the ethics of DSHR. Analysis of qualitative data on stakeholder perceptions and recommendations is ongoing.

Conclusions:

The recruitment of a broad range of participants provides a strong foundation for the ongoing qualitative analysis, which will inform the co-development of a contextually appropriate ethical oversight framework for DSHR in Nigeria and other Low- and Middle-Income Countries. There is a significant need among diverse stakeholders in Nigeria for specialized ethics training in DSHR.