Lack of legislation could allow gene-editing go unchecked

The unwillingness of legislators to bring in laws to control embryo research means that any company could begin conducting human gene editing without regulation.

Genome research represents an ethical minefield and is an area that successive governments have avoided, said Dr Dónal Ó Mathúna, a lecturer in ethics in the school of nursing and human sciences at Dublin City University.

"There is a lack of concern by legislators," he said. "The whole area of reproductive research or practice has got little or no regulation or legislation governing it."

This contrasts sharply with the situation in the UK where on Monday the Human Fertilisation and Embryology Authority (HFEA) granted a research licence to carry out advanced genome editing techniques on human embryos.

The decision was supported by the wider research community. Sarah Norcross, director of Progress Educational Trust, described the decision by the Authority as "a victory for level-headed regulation over moral panic".

“The ruling by the HFEA is a triumph for common sense,” said Prof Darren Griffin, professor of genetics at the University of Kent. “While it is certain that the prospect of gene editing in human embryos raised a series of ethical issues and challenges, the problem has been dealt with in a balanced manner.”

It is this kind of ethical framework that remains lacking in Ireland.

Ireland had an Irish Council for Bioethics that dealt with these issues but it was disbanded before any regulations were introduced by government.

A Commission on Assisted Human Reproduction was set up in 2000. Chaired by Prof Dervilla Donnelly its remit did not extend to the genetic technologies used today by researchers.

Medical council

The only other regulatory control was imposed by the Irish Medical Council, which in its guidelines precluded any registered doctor from embryo destructive research, Dr Ó Mathúna said. This was not repeated in the current version, he added.

The new editing method at the centre of the debate is called Crispr. It affords unprecedented control over additions or deletions to human DNA. It was discovered three years ago and promises to cure conditions such as Cystic Fibrosis by going into cells and editing their DNA.

The same technology could be used however to predetermine hair or eye colour or to modify physical attributes. The spectre of so-called designer babies once again has raised its head, something that calls out for tight regulation of the technology.

Irish researchers in common with colleagues around the world are already using the technique in the lab. One group in Dublin has shown in the test-tube how Cystic Fibrosis could be cured.

The technique can just as well be used in any DNA context including plant breeding, animal husbandry and microbiology.

The lack of oversight was a bad situation, Dr Ó Mathúna said. “It is a lack of desire to tackle the very thorny and contentious ethical issues. It isn’t about abortion but is linked into questions about when the embryo becomes a human life that has to be protected,” he said.

Legislators were unwilling to go after these issues.