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Privacy and Public Benefit in Open Access DNA Databases

Op-ed by Vanessa Lynch

The attention surrounding genetic genealogy (GG) is growing, and open-access genomic data databases are gaining increased traction. Today, we are inundated with stories involving the uploading of unknown crime scene profiles into genetic genealogy databases, and using DNA kinship associations to develop investigative leads. While not as prevalent in Africa, we must be proactive in preparing for the potential impact this trend might have on both offender and humanitarian databases, as well as the utilisation of DNA profiles in genetic genealogy.

Considering the extensive measures most countries undertake to safeguard individual privacy, including policies that govern National DNA Databases, and probably the main reason why many countries in Africa have been slow in progressing with DNA laws, it's amazing how easily GG has entered the scene through the proverbial back door. The objective may be similar in theory, yet unvalidated data (DNA profiles) are being introduced and searched. These profiles originate from labs that may not have established accepted chain of custody protocols or proper quality controls and methods which have yet to be formally validated -– critical components in both quality management and criminal investigations that rely heavily on DNA evidence.

In a recent article which addresses the legal considerations of an Open Access Genomics Database of South Africans the authors discuss the concept of privacy as an individual right highlighting that individuals should have the autonomy to choose whether to make their own genomic data public, provided they understand the associated risks and that their understanding can be verified. While not specifically addressing the use of genomic data as an investigative lead, they propose that the idea of open sharing of genomic data for public benefit is considered positive from a public policy standpoint. However, they do emphasise the need for implementing reasonable protective measures - such as complying with the POPIA (Protection of Personal Information Act) or equivalent legislation.

Considering these factors, we must approach the use of GG in Africa with the utmost caution. While the advantages may seem evident, the associated risks must be just as apparent, if not more so. The potential for compromising due process remains high if left unchecked, which could lead to the application of GG infringing inappropriately upon the rights of individuals within our justice systems.

Interested in reading more?

Check out this article that discusses the controversies of using open-access genomic data as an unregulated 'National DNA Database' for crime investigations.

Vanessa Lynch has a Doctorate of Laws in Forensic DNA Profiling and Ethics.


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