Genetic medicine makes the world less fair


A young Down’s patient with a paediatrician at the Jérôme Lejeune Institute in Paris  PHOTO/BSIP/Universal Images · Getty

Our fear of genetics is diffuse and visceral and surfaces in a range of dystopian visions, from experiments gone wrong, like Frankenstein’s monster, to worlds dominated by genetically enriched super-people. But while our antennae are attuned to things distant, scary and futuristic, we may be missing the more real and immediate threat: genetic medicine as we practice it today is poised to alter our concept of disease and responsibility in ways that will make the world fundamentally more unfair.

If you could use reproductive genetic technology to make sure that your child did not have a genetic disease, would you do it? That question is not science fiction any more for many prospective parents. If you have an increased risk of breast and ovarian cancer because of a variant in your genes, there are now ways to make sure you don’t pass that pathogenic variant along to the next generation. If you and your partner each harbour a single gene for spinal muscular atrophy — and with it a 25% chance that each of your children will be born with a life-threatening degenerative disease — we can remake the odds, assuring that all your children will be born healthy.

Is this desirable? Parents-to-be in the US have voted with their feet: a non-invasive way to take a look at foetal DNA, introduced in 2011, is the fastest-growing genetic test in medical history. But public opinion as a whole is more nuanced, favouring some uses and not others. Americans approve of interventions to reduce a child’s lifetime risk of cancer, but don’t want parents choosing their child’s eye colour or selecting for higher intelligence, says an AP-NORC poll from 2018 (1). We are in favour of healthier babies, but not ‘designer babies’.

But, ironically, it is the negative ramifications of preventing disease — the one aspect of designer babies that does not make us uncomfortable — that may create the most difficult challenges for society in the near future.

How could preventing disease be bad? Isn’t the ability to prevent or even cure genetic disease a benefit to everyone? Unfortunately, a number of concurrent trends suggest that preventing genetic disease will become a luxury enjoyed by the few, not the many. Some genetic diseases may soon be something that happens only to ‘certain people’.

Down’s a difference not an affliction

The canary in this particular coal mine is Down’s syndrome, the most common of a handful of chromosomal conditions for which pregnant women have already been offered testing for decades. To be very clear, Down’s syndrome is a difference, not an affliction. In 2011, when researchers surveyed 284 individuals with Down’s syndrome over age 12, 99% of them said they were happy with their lives (2). Parents of children with Down’s syndrome have spoken movingly to me of the joy their kids bring to them, but also of their need for resources and support.

It’s a crucial challenge, therefore, to offer prenatal testing for Down’s syndrome in a way that demonstrates understanding of these lived realities along with a respect for the needs of those born with the condition. It is an ideal that in practice has often not been met, and expanded screening programs have at times been viewed as an attack on the very humanity of individuals with disabilities.

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