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Thursday, March 28, 2019

How DNA Ancestry Tests Can Turn Your World Upside Down

On paper, genetic ancestry testing (also known as recreational genetics) sounds like a simple, fun, and exciting process, allowing interested individuals to learn more about their ethnic ancestry and lineage.
For a moderate fee, an individual can order a testing kit from a company such as AncestryDNA or 23andme, which is delivered within days. The individual must then spit into a test-tube and send this back. The company then conducts a DNA analysis to estimate an individual’s ethnic origins. These data are stored and shared with the individual over a secure website.

This process can throw up some surprises. For example, some people may be surprised to learn that they are not 100% Irish, as family lore dictates, but a mix of German, Irish, and British. Such information can make for fun family discussions, even though research indicates that the margin of error in the ethnic origin analysis is large.

Family Relationships

In addition to the ethnic origin analysis, the company compares the DNA profile with all the other profiles in its databank, computing the likelihood of any family relationship. Again, results are shared with the individual, resulting in a list of family matches who can be contacted via the website.
This is generally sold as a fun and pleasant process, allowing individuals to connect with hitherto unknown matches such as third cousins, sometimes in far-flung corners of the world.
Unlike the ethnic origin analysis, the family analysis is scientifically reliable, meaning that the identification of close family relations is more or less foolproof, with a negligible margin or error.

Shocking Surprises
Finding a third cousin in Australia maybe a pleasant surprise, but many users are receiving shocking and surprising matches, revealing just who is and who is not a blood relation. This can involve unexpectedly matching with previously unknown people as ‘children,' ‘fathers,’ and ‘mothers.' Conversely, it can involve failures to match with close family members who were assumed to be blood relations.
Common shocks include people learning they were adopted, sperm-donor conceived or the child of a cuckolded father (known as misattributed paternity). News regarding misattributed paternity can be a shock for the whole family- revealing hidden infidelities and dormant secrets.
Similarly, many individuals will learn about new blood relations that they have never met. For example, adopted children will match with their biological parents, and sperm-donors will match with their biological children. Some men will even learn about children they never knew existed.
All this can be shocking and surprising in equal measure.

Existential and Psychological Issues
Mental health research indicates that major unexpected shocks have the potential to cause much emotional upheaval. As such, learning new and unexpected truths about family relationships can raise intense psychological and existential issues for individuals and families.

Shocking news regarding parentage (and especially misattributed paternity) can upset the existing social ecology within families, leading to existential distress and family conflict. Likewise, matching with previously unknown biological parents and children can raise serious questions for individuals: Should I contact them? Should I meet them? Should I have some kind of relationship?
Obviously, every individual who is surprised by DNA testing will have their own answers to these questions, as there is no rule book or standard procedure. For some, learning the truth and connecting with biological relations will be a rewarding journey, meaning new family and friends.
Yet for others, this can be a traumatic experience, and support will be needed on this journey.

Supporting the Surprised
Interestingly, social media has allowed people surprised by DNA testing to connect and create virtual peer support and in-person self-help groups. Primary among these is the Not Parent Expected (NPE) Friends Fellowship, an organization set-up by and for people surprised by such results. This organization runs meet-up groups in major cities as well as Facebook groups, all offering solace and support.
Other support can be given by the helping professions including psychologists, counsellors, religious ministers and the like. However, there is little knowledge or training about these issues in these professions, perhaps due to the recency of the phenomena and the associated lack of research.

Indeed the lack of specific support and associated research is a major gap that must be filled in order to support the casualties of genetic ancestry testing. Presently, we can only speculate on the precise numbers of people affected; however, we can infer that absolute numbers will be high.
For example, misattributed paternity rates are currently estimated at around 2% of the population, and the MIT Technology Review notes that over 26 million people have taken ancestry DNA tests. This means that tens of thousands of users could be receiving shocking news.
Moreover, we know little about the mental health impact of such news. Likewise, there are no clinical guidelines or training texts for working with this population, and little research about effective coping skills, self-help, or peer support among people surprised by such tests.

Conclusion
The surprises thrown up by DNA ancestry testing raises a set of complex ethical, psychological, and social issues. These have been under-discussed by clinicians, researchers, and society as a whole.
To be sure, many people have taken much joy and pleasure from ancestry DNA testing. However recreational genetics has resulted in many casualties, and more action is needed to help the affected. But beware the fun promised by DNA ancestry testing. It can have serious and unforeseen consequences.


About the Author

Rob Whitley, Ph.D., is an assistant professor in the department of psychiatry at McGill University and a research scientist at the Douglas Hospital Research Centre.    

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