A couple of weeks ago I pointed to an article by bioethicist Jacob Appel arguing that genetic screening for severe disease mutations should be mandatory for parents undergoing IVF, and that not doing so is tantamount to child abuse.
Today the same theme is taken up by New Scientist biology editor Michael Le Page, but extending the process to all parents-to-be via carrier testing:
All would-be parents should be offered screening to alert them to any
genetic disorders they risk passing on to their children. Those at risk
should then be offered IVF with pre-implantation genetic diagnosis
(IVF-PGD) to ensure any children are healthy.
This is a perfectly technically feasible approach. Over the last few decades geneticists have uncovered the genetic basis for hundreds of severe inherited diseases; with modern genotyping technology it would be possible to design an assay testing for all known disease mutations in a single scan (indeed, this appears to be the goal of recently uncloaked genetic testing company Counsyl). Couples who both carry known disease-causing mutations in the same gene could then be offered IVF, with pre-natal genetic screening of embryos to identify those that would suffer from the disease.
Such screening wouldn’t prevent all genetic disease (it would miss disease due to very rare or unknown mutations, or due to de novo mutations occurring in the child), but it would certainly have a dramatic impact on the number of children born with horrible diseases such as cystic fibrosis and Duchenne muscular dystrophy.
Le Page argues that the failure to offer such screening as routine is ethically equivalent to allowing children to die of treatable conditions such as diabetes, infection or malnutrition – reports of which are regarded with widespread horror by Western society:
Most people are rightly appalled by such cases. How can parents
stand by and let their children die instead of doing all in their power
to get the best medical care available?
this is precisely what society is doing. We now have the ability to
ensure that children are born free of any one of hundreds of serious
genetic disorders, from cystic fibrosis to early-onset cancers. But
children continue to be born with these diseases.
The argument is straightforward: allowing a child to be born with a disease that will result in a lifetime of suffering and premature death, when a simple screening test could prevent it, is completely morally equivalent to allowing a child to die of infection when effective antibiotics are freely available.
Interestingly, the individual technologies involved in such screening are relatively uncontroversial in mainstream Western society: few people object to carrier testing, IVF is widely accepted, and even pre-natal genetic diagnosis of severe diseases (as opposed to cosmetic traits) appears to be morally unobjectionable to the majority of people. Le Page is not even arguing that the process should be mandatory (unlike Appel), but simply that it should be offered as routine to all potential parents – although he doesn’t state whether or not he believes that the screening should be paid for by the government.
Naturally there are objections to embryo screening among religious conservatives who believe that inflicting severe disease on children is the will of God – but why does the prospect raise such unease among even the secular community? I share Le Page’s puzzlement on this question, and would invite opponents to lay out any well-reasoned arguments against routine screening in the comments below.