What are the downsides of information?

When I returned to my desk after the holidays, I read a fascinating piece in the British Medical Journal by Semsarian and Moynihan (2017) who told the story of John, a 32 year old man whose father had given him an ancestry-based DNA testing kit a couple of Christmases ago. I’d like to share three particular elements of this story (which you can read in full for yourself here) because they illustrate some key issues and questions relating to our society’s focus on information, screening and testing.

Another case of hypergoogleosis

The first issue relates to the reason for the gift. John had been troubled by earwax since he was a child. He had spent some time googling this, and his googling had led John to understand that excessive earwax may have a genetic explanation. This in turn had led to his father giving John (and also John’s daughter Rebecca) the gift of the ancestry test.

Now I am no stranger to the implications of googling. Readers of this blog and attendees at my workshops and courses may recall that I am married to a prolific googler and spend a lot of my time reassuring him that he hasn’t actually developed the latest life-threatening condition whose terrible symptoms have been detailed on wikipedia. Perhaps that’s why the first take-home message from the BMJ article for me is that the consequences of knowledge are often far wider-ranging than we might at first think. That’s not to say that we shouldn’t ever search on topics that we are curious about, but it’s worth bearing in mind that there are costs and downsides to the widespread availability of information, especially when it isn’t placed within the context of expertise or wisdom.

The worrying problem

Semsarian and Moynihan (2017) go on to discuss how, after getting the information back from the ancestry company, John was then able to access lots of information on his genetic risk for particular diseases. This, like a lot of the information generated by other medical screening tests (including many of those offered in pregnancy) can generate a lot of anxiety. Genetic testing can be incredibly useful if it is used in a specific way, and after someone has received adequate information about the pros and cons and made an informed decision about whether it is right for them. But in this case, and in many other cases, screening for problems in otherwise healthy people can lead to a whole load of unnecessary worry and do more harm than good.

Is screening accurate?

The final take-home message for me sits in the punchline to this story and makes a vital point about the accuraccy and validity of such testing:

“At their next Christmas gathering, John compared his genetic ancestry results with Rebecca and found that they had different genetic origins. The discussions at the family Christmas dinner were interesting.”

I’ll just bet they were! I’m hoping that a bit more googling would have shown that no screening test is right 100% of the time, and it’s vital to bear in mind that, when it comes to certain kinds of screening, errors are not only possible but actually far more likely than you might think.

I don’t want to be a party pooper here. I’m not necessarily against genetic testing for fun, and individualised medical genetic testing can be incredibly helpful under appropriate circumstances. I’m just pointing out that there are consequences to the gaining of information that we don’t always think about. Is it a coincidence that the era that is characterised by an increase in the accessibility of information is also characterised by an increase in the level of reported anxiety? And, if so, are there things that we could do about that?

 

Semsarian C and Moynihan R (2017). The Christmas gift of genetic uncertainty. BMJ 2017: 359: j5762.
Photo by Rodion Kutsaev on Unsplash
 

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