Both my daughters-in-law are currently pregnant and going through the routine scans etc. that are in the gift of the NHS. There's nothing unusual in that. However, across the Atlantic something unusual is happening.
In Boston the BabySeq Project is under way in which 240 healthy babies and 240 babies born in intensive care will have their whole genomes sequenced. The team undertaking the research will be looking for a series of protein-coding genes that are strongly associated with diseases that begin in childhood and also for mutations linked to diseases that occur in later life.
It is possible that some physical interventions, or enhanced check-ups, could follow this analysis. And all the subjects will be monitored for at least five years.
Perhaps all of the above is not particularly controversial and the approach being taken by the investigating team certainly appears to be well thought through and careful. But it does start to open up a whole gamut of ethical questions.
The babies have not given their consent to sequencing. To what extent should parents then be able to agree to medical interventions based on this new knowledge? When the child reaches adulthood who will own the data? Will the subject be able to ask for it to be destroyed?
And looking further ahead - it will become easier for pre-natal testing to be done. What decisions may that prompt? What are the ethics of gene therapy at this stage?
We face a brave new world here. The Boston trial is a good first step but we must be vigilant that future moves are equally well founded.
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