This paper presents a multi-phase participatory design study aimed at developing effective methods for communicating the risks and benefits of genetic data sharing. The study involved designing and evaluating various risk communication methods, with informational videos and infographics being preferred by participants. The informational video proved more effective in enhancing content recall and influencing participants’ reluctance to share DNA data, with 77.1% of video participants unwilling to share their DNA in an open genealogy database, compared to 64.2% in the infographic group. This suggests that video-based communication may better convey the complexities of genetic data sharing, including privacy concerns and ethical considerations. The findings highlight the importance of multi-sensory engagement in risk communication strategies, which can be leveraged by developers and policymakers to improve public awareness and informed decision-making regarding genetic privacy.

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From Concept to Impact: Risk Communication Methods for DNA Data Sharing

  • Lipsarani Sahoo,
  • Elham Al Qahtani,
  • Yousra Javed,
  • Mohamed Shehab

摘要

This paper presents a multi-phase participatory design study aimed at developing effective methods for communicating the risks and benefits of genetic data sharing. The study involved designing and evaluating various risk communication methods, with informational videos and infographics being preferred by participants. The informational video proved more effective in enhancing content recall and influencing participants’ reluctance to share DNA data, with 77.1% of video participants unwilling to share their DNA in an open genealogy database, compared to 64.2% in the infographic group. This suggests that video-based communication may better convey the complexities of genetic data sharing, including privacy concerns and ethical considerations. The findings highlight the importance of multi-sensory engagement in risk communication strategies, which can be leveraged by developers and policymakers to improve public awareness and informed decision-making regarding genetic privacy.