Ireland ill-prepared for ethical issues raised by gene editing, says expert

Ireland is ill-prepared to deal with the ethical and legal concerns raised by the increasing ability of scientists to edit human genes, according to an Irish expert on genetic law.

The announcement this week by US scientists that they have successfully modified human embryos to remove genetic mutations causing heart disease is a "game-changer" in scientific and ethical terms, says Dr Aisling de Paor, a law lecturer in Dublin City University.

The development, greeted as a landmark in gene editing, moves us one step closer to an era of “designer babies” she says.

“It opens the door to tailoring the genetic make-up of our children. It also facilitates the selection of hair or eye colour, sporting ability, or behavioural traits.”

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Dr de Paor is concerned that the achievement could signal a re-invigoration of eugenic-type ideas, long discredited since the Nazi era. “It is no longer in the realm of science fiction to imagine a Gattica-type society focused on genetic cleansing. We need to be worried about the possibility of this new age of eugenics.”

In the study published this week, the US scientists used a powerful gene editing tool to fix mutations in embryos made with the sperm of a man with an inherited heart condition. This dramatically reduced the number of embryos that carried the dangerous mutation.

‘Screen out disability’

Dr de Paor, the author of a forthcoming book on genetic law and policy, says these kind of genetic advances provide the “lens” to view, identify and eradicate disability. “So with these new developments there is the ethical concern that technology will be used to screen out disability in society. This is extremely worrying from a human rights perspective, and in relation to the current and future rights of people with disabilities.”

She foresees issues with discrimination and stigmatisation in a world where disability is being eradicated, as well as the exacerbation of societal inequities caused by differing levels of access to the technology.

Ireland has no concrete legal framework to deal with these issues, she says, and we are effectively operating in a regulatory vacuum. Dr de Paor says clear and informed regulation is needed but this should be preceded by an active dialogue involving scientists, doctors, regulators and the general public.

Family line

Dr Simon Fishel, director of Beacon Care Fertility and a member of the UK team that pioneered IVF treatment, says the new technology will make it possible to prevent hereditary diseases passing from one generation to the next.

“This is exciting research that in time may herald a new approach for correcting embryos carrying devastating genetic disorders. Such technology would ensure that those families afflicted with such diseases no longer need worry about passing it down the family line. This could eradicate over time diseases such as cystic fibrosis, which are severely life limiting.

“I think all potential parents would like to have happy healthy children free from pain and suffering where possible. I see no ethical problem with this one as long as appropriate medical and regulatory safeguards are put in place”