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Should the advent of cheap and fast DNA sequencing mean parents get the right to unearth the genetic secrets of their children? The Nuffield Council on Bioethics this week聽alludes to this question. It released a聽.

The council, whose聽work聽often influences biomedical policy around the world, points out聽that genome sequencing for babies can be provided on the UK鈥檚 National Health Service, and may work in tandem with the country鈥檚 100,000 genomes project to give insights on links between DNA and disease. These are excellent steps forward for diagnosis and early treatment for ill babies and children.

However, the council points to existing recommendations by other bodies that it should be used for serious childhood illnesses. These say that genomic tests should not be used to screen babies for diseases of later life or for seemingly healthy children, even on the private market. Screening should only be done for conditions that are 鈥渟erious and treatable鈥�, and only in those cases where there is evidence that genome screening will 鈥渞educe ill-health or death鈥�.

Public vs private

A discussion聽is necessary because whole-genome sequencing has become fast and inexpensive, costing only about $1000, a fraction of what it used to. The process uses a blood or saliva sample, through which we can interpret a person鈥檚 genetic code to identify markers for disease.

Existing聽guidance makes sense in the context of genome screening on the NHS. It is probably not yet cost-effective to screen every new baby born in the UK via this publicly funded service. However, if parents decide that they would like information about the health of their child, they should be free to obtain screening privately.

University of Oxford bioethicist Julian Savulescu backs genome screening for conditions that have an onset in childhood that would either be preventable or when measures can be taken to lessen the severity of those conditions. But he also champions the idea of allowing a broader search for genetic markers of illness risk, even for late-onset diseases (such as dementia or Huntington鈥檚) on the private market.

While the Nuffield briefing doesn鈥檛 talk of genetic testing of fetuses, the debate may soon apply there too if a more recent technology that can sequence their whole genomes in the womb becomes available. Parents should be able to access that privately as well.

Complicated ethics

None of this denies that there are ethical issues with genome screening for babies, fetuses and embryos, including whether genomic counsellors have a responsibility to explain the nuances at play in genome sequencing, which can sometimes be very complicated. After all, much of the way the human genome functions is still a mystery.

And, what kinds of traits should parents be testing for? Only disease traits that are 鈥渟erious鈥�? If untreatable conditions of adulthood are flagged up, would that taint an otherwise fulfilling life? Or do parents have a right to all the information available? What about conditions like attention deficit hyperactivity disorder?

For fetal testing, the debate gets more pointed. Is it ethical to sequence the genome of a fetus and then abort it on the basis of the information, or create an embryo via IVF for example and not implant it, if it shows genetic conditions, including late-onset ones?

Savulescu believes that parents have a right to decide how they construct their family and whether to have a child or not. 鈥淪ince [even late-onset disease] is highly relevant information for their future family, I think they ought to be provided with it,鈥� he says.

Rational decisions

The debate is comparable to that surrounding non-invasive prenatal testing, which can tell with 97 per cent accuracy after only nine weeks of pregnancy whether a fetus has a chromosomal abnormality, and what its sex is.

When I was pregnant, I paid privately to access the test. It showed that my baby had a one in a million chance of carrying a chromosomal condition. It gave me peace of mind, but had it showed a different result, it would have allowed me to prepare myself for a more challenging life, or even given me space to decide that I was not capable of managing that outcome. Every parent should have the right to use available technology to decide whether the health of a fetus is a factor in continuing their pregnancy.

Ultimately, as Savulescu says, we should be using science to make rational decisions about our families.

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