AIMS

Promoting Open Science through ethical and efficient Sharing of Genomic Data for Research

Are you looking for (sharing) genome data? Discover more data with REPOSITIVE platform (supported by DNA Digest) that contributes to speeding up genetic diagnostics and research through efficient data access solutions. Moreover, this essay brings to your attention 10 Rules (presented in BioRxiv) that have been developed from combined experiences of working with human genomic data, data repositories and data users. 

“Genomic research promises major advances in our understanding of health and disease. In parallel, sharing genomic data offers encouraging prospects to accelerate research by generating information-rich genome datasets…”, - Open sharing of genomic data: Who does it and why?

REPOSITIVE - the company that created the world’s largest portal for accessing human genomic research data - is expanding the range of data available with the launch of a Specialist Data Collection for the Personal Genome Project. This Collection presents all of the data collected for the Personal Genome Project available in one place, combining data currently held in the US, UK, and Austria, and thus enabling researchers to quickly and easily find the data they need.

While endorsing the release of software as Open Source and doing this whenever practically and technically possible, the REPOSITIVE platform contributes to speeding up genetic diagnostics and powering research through efficient data access solutions. 

REPOSITIVE enables you to build powerful search queries using predicated and boolean terms, filters to slice & dice results by accessibility, data source or assay type. Create account and browse in REPOSITIVE Data Discovery through multiple repositories for the human genomic data (organised into collections). 

With REPOSITIVE platform you can:

  • share datasets on the platform with colleagues, 
  • annotate them with public tags,
  • add them to your favourites to quickly return to them later,
  • discuss your work, 
  • meet new collaborators and 
  • actively promote Open Science (REPOSITIVE aims to make genomic data more accessible and make results more reproducible & citable).

"Open Science commonly refers to efforts to make the output of publicly funded research more widely accessible in digital format to the scientific community, the business sector, or society more generally.
Open Science is the encounter between the age-old tradition of openness in science and the tools of information and communications technologies (ICTs) that have reshaped the scientific enterprise and require a critical look from policy makers seeking to promote long-term research as well as innovation", - Making Open Science a Reality, OECD

Considering that both enabling ethical data sharing and ensuring genetic privacy remains challenging, REPOSITIVE respects the individual's right to privacy, advocates full adherence to patient consent and data privacy laws, and encourages responsible custodianship of genomic data.

There are a number of international efforts underway to establish standards for good practice in sharing human genomic data:

10 Rules for Sharing Human Genomic Data - presented in a BioRxiv's preprint as follows - : 
 

Rule 1: Recognise the intrinsic value of the data

Rule 2: Choose the appropriate patient consent framework

Rule 3: Check whether support for data sharing is available

Rule 4: Understand the datasets you generate

Rule 5: Context is king: adhere to metadata standard descriptions

Rule 6: Check the accuracy of your metadata

Rule 7: Maximise the machine readability of your metadata

Rule 8: Choose the most appropriate repository for your data

Rule 9: Upload both raw and processed data

Rule 10: Make it easy to cite your data

can help researchers to increase the reusability of their human genomic data, whilst also ensuring that the privacy of their subjects is maintained according to their consent frameworks.

Many of the principles presented in the pre-print "10 Simple Rules for Sharing Human Genomic Data" are also applicable to other types of clinical research data, where participant privacy is a concern.

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