Interview data on perceptions of genetics illustrations

This project contains datasets related to:

Development and assessment of tailored illustrations to enhance community understandings of genetics topics

AM Arner, TC McCabe, A Seyler, SN Zamri, TBT A/P Tan Boon Huat, KL Tam, P Kinyua, E John, SN Njeru, YAL Lim, M Gurven, C Nicholas, J Ayroles, VV Venkataraman, TS Kraft, IJ Wallace, AJ Lea

A preprint of this work can be found here: https://www.biorxiv.org/content/10.64898/2026.03.17.711941v1.full

Specifically, the data provided here are:

1) genetics_illustrations_Zenodo_codebook - Explanations of the columns included in the data file
2) genetics_illustrations_Zenodo - In this study, we created images illustrating answers to frequently asked questions about genetics, iteratively updating the illustrations based on participant feedback. We then conducted interviews to evaluate the finalized illustrations’ effectiveness; this file contains the de-identified interview data.

These data were collected by the Orang Asli Health and Lifeways Project (OA HeLP). The project adheres to the “CARE Principles for Indigenous Data Governance” (Collective Benefit, Authority to Control, Responsibility, and Ethics) and we are committed to the “FAIR Guiding Principles for scientific data management and stewardship” (Findable, Accessible, Interoperable, Reusable). To adhere to these principles while minimizing risks, individual-level data are stored under restricted access.

The data can be accessed as follows:

Requests for de-identified, individual-level data should take the form of an application that details the exact uses of the data and the research questions to be addressed, procedures that will be employed for data security and individual privacy, potential benefits to the study communities, and procedures for assessing and minimizing stigmatizing interpretations of the research results. Requests for de-identified, individual-level data will require a data use agreement (available at lea-lab.org/resources) and may require institutional IRB approval. Please contact amanda.j.lea@vanderbilt.edu with any questions.