Ethics, privacy, and commercial DNA testing
The Double Helix History Word Tour ™ has been continuing in full swing over recent weeks with talks and workshops in Canberra and Sydney, focus groups in Liverpool, Leeds, and Sheffield and interviews across Greater Manchester and Yorkshire as we continued our push for transhemispheric genealogical and genomic knowledge exchange! Stay tuned in case we are coming to a town near you very soon (I’m talking to you Netherlands, Michigan, Louisiana, and Soilhull!!).
One area that we have discussed with many researchers is that of the responsibility of companies and institutions to prepare DNA testers for potentially upsetting or shocking findings, a theme picked up on last week by The Guardian.
While some researchers enter the genetic genealogy fray having conducted extensive research into platforms and potential pitfalls as well as consulting their nearest and dearest genetic relatives and reading terms and conditions in great detail, it must be said that these individuals are in the VERY TINY minority. The novelty of the techniques and this form of knowledge and the unique data management and ownership effects mean that the wider impacts are yet to be fully apparent or appreciated.
Whilst the large majority of our collaborators have, on balance, found that the positives for their research have outweighed the negatives, we have also heard experiences of difficult emotions and consequences of genetic genealogical testing. One thing becoming apparent is that family historians have often been the keepers, revealers, and managers of family secrets and legacy. This responsibility for curating the family’s past often has profound implications for the family’s present: if you know or discover something surprising, painful, or difficult, how do you decide what to share and who to share it with, knowing that there will be significant and unpredictable real-life impact? DNA sequencing has added greater complexity to these issues and increased potential for unexpected discoveries.
What considerations does a researcher need to make when managing other individuals’ data? Many genealogists have enthusiastically gathered their relative’s DNA data to help with research and gain more matches but now find themselves as administrators of genetic data banks, in a world where police hack genealogy databases to solve crimes and health researchers develop ever more complex techniques to identify genetic diseases and problems. How many researchers would have thought as their relative was spitting into a tube about how they would act as the long-term custodian of their genetic archive when they died? These are the type of issues that increasing numbers of researchers are now grappling with.
Whilst for many people genealogy is an enjoyable pastime that combines real-life detective work and problem solving with the potential to find out about our own origins and the historical context of our ancestors’ lives, for some individuals, including many of our collaborators and their family members, it is a method used to try and answer fundamental questions about their direct parentage and personal identity.
There is no guarantee that an individual who knows they have been adopted, or is searching for an unknown parent or grandparent will make a positive match or discovery, and even when someone does, there is no guarantee that the matching individual or family will be receptive to the contact. How might an individual feel if, through their testing, a cousin or second cousin who has never tested or wanted to be tested finds out that they have a half-sibling they never knew about?
We have been very lucky and privileged to hear frank and candid experiences from a wide range of researchers about many of the difficult ethical issues that DNA genealogical testing has generated and as we work through them and try to make sense of where we are as a community of researchers, the issues of corporate and personal responsibility are highly pertinent.