Is germline gene therapy ethical?

Germline gene therapy is when DNA is transferred into the cells that produce reproductive cells, eggs or sperm, in the body. This type of therapy allows for the correction of disease-causing gene variants that are certain to be passed down from generation to generation.

However, for many, this is where they feel the benefits of germline gene therapy stop. Germline gene therapy is currently not legal in the UK because the risks still appear to outweigh the benefits.

Somatic gene therapy is when DNA is transferred into body tissues. It specifically targets cells in the body which are not passed on to the person’s children. As a consequence, it doesn’t raise the same ethical issues as germline gene therapy.

So, do the ethical issues associated with germline gene therapy make it unacceptable? Or, is it just the lesser of two evils when compared with the impact of some genetic diseases? Read some of the arguments for and against, and see what you think…

Do the potential benefits of germline gene therapy outweigh the potential risks?
Does germline gene therapy consider an individual’s human rights?
Is germline gene therapy ethically acceptable?
Is germline gene therapy affordable?
Is germline gene therapy really needed?

Do the potential benefits of germline gene therapy outweigh the potential risks?

Yes

Germline gene therapy enables the correction of disease-causing mutations that are certain to be passed on from generation to generation, sparing future generations from suffering from the disease.
It enables the generation being treated to lead a healthy life.

No

The effects of gene therapy are too unpredictable. Even if the therapy successfully cures the disease, other mutations can potentially be introduced.
Because germline gene therapy targets the reproductive cells, any additional mutations that are introduced as a result will be passed on to the next generation.

Does germline gene therapy consider an individual's human rights?

Yes

No unborn child, whether conceived naturally or artificially through IVF and germline gene therapy, is able to choose their genetics and whether they are born with or without a particular condition.

No

Individuals produced through germline gene therapy cannot give their consent for their genetic material to be modified.

Is germline gene therapy ethically acceptable?

Yes

In the UK, the Gene Therapy Advisory Committee (GTAC) was set up in 1993 to regulate the use of gene therapy. All requests to carry out any kind of gene therapy on humans must be approved by GTAC’s Research Ethics Committee (REC) before it can go ahead.
GTAC advises on the ethical acceptability of proposals for gene therapy research on humans.
This regulation prevents gene therapy being used to select characteristics for non-medical purposes to “design” babies.
The US National Human Genome Research Institute, aims to identify all ethical and legal issues associated with emerging genetic research. It believes that consideration of the ethical arguments should accompany new genetic modification practices, rather than react to them. This will help to ensure that potentially harmful consequences are avoided altogether.

No

Theoretically germline gene therapy could be used to select for particular physical characteristics regardless of whether they are important for the health of the individual.
On a large scale, germline gene therapy could result in the selection of characteristics to “improve” the genetics of a population.
The widespread use of germline gene therapy may make society less accepting of people who are different or who have a particular disability or genetic condition.

Is germline gene therapy affordable?

Yes

If germline gene therapy has the potential to remove a disease completely from the population it will reduce/remove the long term healthcare costs of treating the disease. This is likely to justify it being available through the National Health Service (NHS) in the UK.

No

In areas of the world without a free health service, only parents who can afford suitable health insurance will be able to undergo germline gene therapy. Poorer parents will not have access to this form of therapy.

Is germline gene therapy really needed?

Yes

With the widespread use of germline gene therapy particular genetic conditions could be eliminated from the population altogether. Conditions like Huntington’s disease could become diseases of the past, in the same way that global vaccination programmes have eradicated diseases like polio.

No

Germline gene therapy would never be effective enough to rule out the need for post-fertilisation screening of embryos.
Germline gene therapy involves more steps and introduces additional risks to the embryo compared with IVF and screening for healthy embryos before implantation.

This page was last updated on 2015-06-03