Mischa Angrist and Brendan Maher point me to two interest personal genomics related stories. First, a follow up on inadvertent uncovering of incest story from last winter in GenomeWeb, Incidental Findings:
Recently, he and his colleagues encountered a case in which a married mother of three children with cognitive and developmental disabilities — the eldest of which she conceived in a previous union — opted to submit their genetic samples for screening. The researchers discovered a span of homozygosity that indicated the oldest child was the product of an incestuous conception between first-degree relatives. When they informed the mother of what they found, Beaudet says she vehemently denied such a relationship and demanded that the test be repeated. “The test was repeated and [the result] was the same,” he says. “And then she sort of broke down and said: ‘My husband will divorce me if he finds out about this.’ … There are just a lot of difficult things that come up.”
A few years ago professionals had discussions about whether they should even divulge this sort of information which might destabilize the family unit. In particular in relation to paternity. I think that’s a moot point, the horse has left the barn. Unless there’s a proactive effort by the powers that be to prevent consumers to from having any access to their own genetic information not facing up to these issues in the short run is probably just a matter of kicking the ball down the field. The only cases where I think it might be prudent would be when individuals have very short life expectancies, those with terminal conditions or the elderly. Otherwise you’re trying to run out a clock which will explode in your face.
Speaking of kicking the ball down the field, should children be tested for “adult” diseases? Some people think not, Parents ‘want child gene tests’:
Helen Wallace, from genetic science lobby group Genewatch UK, said: “Online gene tests frequently give misleading results because most common conditions such as cancer, obesity or diabetes are not predicable from a person’s genes, except in special circumstances.
“Children should not be tested for risk of adult-onset conditions, full stop. They should be allowed to decide for themselves, with medical advice, when they are grown up.”
Dr Vivienne Nathanson, director of BMA Professional Activities, said: “We would have concerns about genetic testing being widely available over the internet or off the shelf because parents could find out results without a health professional to help intepret them. They may also find out about genetic abnormalities for which there are no cures, or be caused needless worry.
From what I can tell GeneWatch UK is straight out of central casting for Left-science-neo-Luddite. In some areas vigilance is probably warranted, I’m not too sanguine about government intentions or execution either, but a lot of their material looks alarmist to the point of farcical. In any case, disease knows no hard and fast distinction between children and adults at age 18. I am going to get my children tested as soon as possible personally.
More information is not always better than less. But in most cases I think it is, and in the domain of personal health it almost always is.