22 November 2016

How should DNA test results be preserved?

Millions of us have taken DNA tests for genealogy. The results, stored in testing company databases, can be downloaded to a third party site for wider comparison or special personal investigation, or simply for the assurance that you have a copy of your data under your own control.

In addition to their use for family history DNA test results have long-term societal value, They have revolutionised understanding of migration and opened a new window for medical understanding. We cannot know how such rich data may help elucidate understanding in the future. But we can be certain that unless the data is retained this will not be possible.

Storage in a private database is no guarantee of long-term preservation. Companies are subject to the vagaries of market forces. Volunteer projects can fail. Charitable projects are wound up. We already have the example of the Sorenson Molecular Genealogy Foundation which ceased operation after the death of the founder. Although some of the data was acquired by Ancestry.com it appears only the part of the DNA data of company interest was retained.

What would be the best way to ensure long-term survival and reasonable cost, and with necessary mechanisms for protection of privacy? The experts are national archival organizations such as NARA in the US, TNA in the UK and Library and Archives Canada; all have growing capabilities for management of large digital data sets. They already hold records for individuals, such as military service files which contain personal data such as height, weight, colour of eyes and hair. DNA is just another type of personal data.

Some may argue that DNA data is scientific which those archives don't traditionally hold in any quantity. It's apparently not on the radar, at least judging by the consultation document released by TNA on it's new strategic vision for the archives Sector (pdf). Why not?


Family Sleuther said...

I also wonder what happens to the now millions of DNA kits that have been analyzed when the technology advances. Will corporations take it upon themselves to run old kits against new evolving technology to shed more light on our ancestry? I'm thinking specifically of relatives who have passed away since testing. Their DNA samples are even more valuable because they cannot provide new samples for new to-be-invented DNA tests.

napobo3 said...

The good example is DataBank that stores the full mito-DNA sequences for everybody.