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Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment

Posted Aug 24 2009 10:24pm

If you are a parent, would you have asked for a genetic test for autism on your child before his/her diagnosis?

Consider an article in today’s issue of the journal Pediatrics, “Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment”.

This is not about autism specifically, but about an unnamed “disease”. The researchers posed two “vignettes” and asked the parent to respond to them.

Before people heap criticism over bringing up a paper with the word “Diseases” in the title (and throughout the paper) in relation to a discussion of autism: I am not saying autism is a disease.

Here are the two vignettes:

Vignette 1: Disease With Severe Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Disease symptoms are severe and sometimes lead to early death. People may develop symptoms either as an adult or as a child, and it is not possible to predict how old a person will be when he or she develops symptoms.
Would you want to have your child get this genetic test? Please answer for your youngest child.

And

Vignette 2: Disease With Uncertain Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Some people with this disease will develop severe symptoms, whereas others will develop only mild symptoms. It is not possible to predict how severe the symptoms will be or at what age they will develop.
Would you want to have your child get this genetic test? Please answer for your youngest child.

I would argue that the public’s perception of autism (especially with regression) would fit into Vignette 2. I would further argue that if “disease” were replaced with “developmental disability”, it would have been an even more relevant to the public’s perception of autism.

The results surprised me. There was little if any difference in the responses to vignette 1 and vignette 2. Somehow, I figured more people would want the test for conditions that were always severe and could result in death (vignette 1).

For both vignettes, the responses were fairly evenly split into 3: “probably/definitely”, “unsure” and “probably not/definitely not”.

In other words, about 1/3 of parents say they would want a genetic test and about 1/3 say they would not, with the remainder unsure.

It would be very interesting to formulate “vignettes” that are targeted to developmental delays in general and autism in specific.

What if instead of “diseases” they asked about “developmental delays”? What if instead of “no treatment” they said, “no cure, but some therapies (e.g. speech and occupational) could be beneficial”? What would the responses be like?

The main reason this paper caught my eye is the fact that the study begs the question: if the genetic test can be performed on child, why not prenatally? What would be the difference in the responses from the parents if they were asked about prenatal testing?

Or, to put it very specifically, what if parents were told to consider a genetic test for autism?

How would the responses vary depending on the parents’ perception of autism?

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