GA4GH Data Security Work Stream welcomes new Co-Leads Jaime Delgado and Andrew Russette

24 May 2024

Jaime Delgado of the Universitat Politècnica de Catalunya (UPC BarcelonaTECH) and Andrew Russette of the National Center for Biotechnology Information (NCBI/NLM/NIH) have been appointed as the new Co-Leads of the GA4GH Data Security Work Stream.

By Jaclyn Estrin, GA4GH Science Writer

The Global Alliance for Genomics and Health (GA4GH) welcomes Jaime Delgado and Andrew Russette as the new Co-Leads of the Data Security Work Stream (DSWS). To safeguard genomic and related health data, DSWS develops standards to ensure that the privacy, confidentiality, and integrity of this data is protected. 

Russette and Delgado will succeed David Bernick of the Broad Institute of MIT and Harvard, and Lucila Ohno-Machado of the University of California, San Diego. Bernick and Ohno-Machado served as Co-Leads of the Data Security Work Stream since 2019 and 2022, respectively. Bernick was instrumental in co-leading the development of the GA4GH Authorisation and Authentication Infrastructure (AAI) and Passports standards.

A person’s genome — the entire set of DNA and genes that form a person’s genetic identity — is unique.

Data security is vital to protect the privacy and confidentiality of patients’ genetic data and the personal health information it can reveal. However, the advancement of technology and increasingly complex healthcare data systems has led to the increased risk of data breaches. The non-consensual disclosure of genetic information can compromise the health history of patients and violates their right to privacy. 

Because patient data is required to progress research, patients must feel confident that their data will be kept secure when giving consent to its use. Therefore, the establishment of secure data systems and exchange must advance in tandem with the cultivation of patient trust. 

DSWS develops guidance and technical tools to mitigate the risks of privacy breaches and ensure data confidentiality, service availability, and the safe and secure use of an individual’s genomic data.

Delgado, a Full Professor at the Universitat Politècnica de Catalunya (UPC), has been a DSWS contributor for six years. With a background in telecommunications engineering, Delgado has been working on the development of standards since the late 1980s, with a focus on the security of audiovisual content, eHealth, and genomics. 

Delgado emphasised that the sharing of genomic data requires “a series of compromises and balances due to the sensitivity of genomic information.” While increased access to genetic data can aid researchers in pinpointing patterns, trends, and anomalies, there is a parallel risk of data security breaches.

Delgado noted that it is vital to have security mechanisms in place that increase genomic data accessibility while simultaneously maintaining patient privacy. This would require an architecture that includes standards and protocols for each step of the data lifecycle, including sourcing, storage, use, and sharing.

Russette is the Technical Program Manager for the Medical Genetics and Human Variation program at the National Center for Biotechnology Information (NCBI), a division of the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 

Russette has expertise in both the medical and defence fields, with over twenty years of experience in technology development for government and commercial organisations. He has extensive experience in data access controls and security requirements with the Database of Human Genotypes and Phenotypes (dbGaP), as well as implementing and communicating about these controls.

“Technology can and should be a strong tool to benefit medical sciences through the use of secure, reliable solutions to global healthcare,” said Russette.

Working in partnership with DSWS members and GA4GH contributors, Delgado and Russette aim to develop standards that leverage best practices from commercial and government sectors to enhance secure data access, storage, and dissemination for the global healthcare community.

Another area of interest includes data provenance, which provides context about the data’s origin. This increases researcher confidence in the accuracy of the data. However, data provenance may also embed identifying information about a patient, requiring additional protections.

The new Co-Leads are also considering dynamic consent — an approach that extends existing patient consents for use of the genetic information in new and emerging research — and exploring secure process automation to maintain integrity and privacy of data. 

Delgado and Russette are looking forward to collaborating with the members of the Data Security Work Stream to customise a road map to address community priorities. “I am very honoured to take this role and put into action the goals of the Data Security Work Stream,” said Delgado. 

Russette agreed that the goals of the Work Stream will ultimately “increase the security and useability of data.” 

DSWS welcomes new participants. For those interested in getting involved, please express your interest in joining, or reach out to Work Stream Manager Jessica Seegobin with any questions.