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Checklist for gene/disease-specific variation database curators to enable ethical data management.

Rosemary Ekong¹, Mauno Vihinen²

¹Department of Genetics, Evolution & Environment, University College London, London, UK.

|July 27, 2019

Summary

Ethical guidelines for variant and phenotype databases are crucial for advancing research. This work provides practical steps for database curators to ensure responsible data handling and privacy protection.

Keywords:

data collection data curation database curators ethical data management genetic variation databases practical checklist sharing variant data

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Area of Science:

Bioinformatics
Genetics
Data Management

Background:

Variant and phenotype databases are vital for research and healthcare.
Sharing data globally is essential but raises ethical and privacy issues.
Database curators must adhere to ethical standards.

Purpose of the Study:

To update and streamline ethical guidelines for locus-specific/gene variant database curators.
To provide practical steps for ethical data curation.

Main Methods:

A Working Group of the Human Variome Project was convened.
The group focused on updating and streamlining ethical guidelines.
Practical and achievable steps were developed.

Main Results:

A set of practical steps for database curators was established.
These steps aim to ensure ethical data handling and privacy.
The guidelines are designed for locus-specific/gene variant databases.

Conclusions:

Adherence to ethical standards is paramount for database curators.
Streamlined guidelines facilitate responsible data sharing.
These practical steps support the advancement of genetic research and individual welfare.