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Researcher Knowledge, Attitudes, and Communication Practices for Genomic Data Sharing.

Heather P Nick¹, Kelsey Kehoe², Amanda Gammon²

¹University of Utah, Salt Lake City, UT, USA.

Journal of Empirical Research on Human Research Ethics : JERHRE

|November 2, 2020

Summary

Researchers found that principal investigators and coordinators understand basic genomic data sharing rules but miss policy updates. They noted fewer consent options and more questions from parents of pediatric patients, indicating consent process improvements are needed.

Keywords:

communication dbGaP genomic data sharing informed consent participant privacy principal investigators research coordinators stakeholder views

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Area of Science:

Genomic Data Sharing
Cancer Research
Bioethics

Background:

Genomic data sharing is crucial for advancing research but faces challenges in implementation.
Understanding the perspectives of those involved in consent is vital for effective data sharing policies.

Purpose of the Study:

To examine knowledge, attitudes, and communication practices regarding genomic data sharing.
To identify challenges and potential improvements in the consent process for genomic data sharing.

Main Methods:

Conducted 25 individual semi-structured interviews with principal investigators and research coordinators.
Performed a qualitative thematic analysis of interview data.

Main Results:

Interviewees possessed basic knowledge of data sharing but lacked specifics on recent National Institutes of Health (NIH) policy changes.
Principal investigators perceived higher participant risks in data sharing compared to research coordinators.
A trend towards reduced data sharing options during consent and increased questions from parents of pediatric patients were observed.

Conclusions:

Gaps in knowledge regarding NIH data sharing policies need addressing.
The consent process for genomic data sharing requires refinement to better inform participants and address concerns.
Further research should focus on optimizing communication strategies for genomic data sharing consent.