This spring German scientists wanted to find out how much people liked to know about their future. They also wanted to find out if there were any difference between future positive and negative events. With genetic testing becoming more and more available, this is a highly relevant question.

Positive and negative events

The same questions were asked to 2000 volunteers in Germany and Spain.

Regarding negative events, the scientists asked – among many things – if the participants wanted to know their cause of death. They also asked if the participants wanted to know their partners cause of death and how much time they had left together.

Regarding positive events the scientists asked if the participants wanted to know the content of their Christmas gifts and the sex of their baby.

See more: Find the full study here

Any difference?

So was there any difference between positive and negative events? Just a small one.

When it came to negative events only 15 to 10 percent wanted to know. Regarding positive events, the percentage was somewhat higher but still relatively low – around 30. Put in other words: regardless of the emotional value of the upcoming event, the vast majority claimed the right not to know.

(The only event the majority of people preferred to know was the sex of their baby.)

The mechanisms of not wanting to know

When it came to positive events the scientists concluded that knowledge ruined the surprise. And everybody loves a good surprise – especially when it comes down to Christmas gifts! Or…?

A general trait with the people that wanted not to know was that they wanted to avoid regret; to avoid knowledge about how choices today would affect events in the future.

The scientists called this «expected regret»: by not knowing, you avoid to feel regret over your own life and how you have lived it.

Genetic testing for HD

This research can give us an understanding about genetic testing for HD. Since the test was made available over 20 years ago the percentage of people taking it has been 10 to 15 percent. This reflects the percentage of people that maintained the right not to know about negative events.

For the majority of people at risk it can therefore seem like the possible positive outcomes of a genetic test is outweighed by the negative ones.

But is it best to know or not? What lays on both sides on the weighing scale?

All these questions will be debated and discussed during EHA’s conference in Sofia this September. Our doctor Alzbeta Muelhbaeck will guide us through many of the current issues regarding genetic testing.

If you want to ask Dr.Muelhbaeck anything upfront – or anything about Huntington’s disease in general – you can contact her through this site.

We hope to see you in Sofia!