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Families with genetic diseases support genome-editing research

28 November 2016
Appeared in BioNews 879

More than 75 percent of those with a genetic condition, and their family members, support the use of genome-editing technology, a survey has found.

But the survey respondents saw a clear distinction between treating medical conditions and the enhancement of physical or cognitive attributes in healthy people – 86 percent were against using the technology in this way.

The survey was conducted by Genetic Alliance UK and involved 152 respondents who had a genetic condition, or who had a family member with such a condition. The charity's director, Alastair Kent, said: 'It is sometimes claimed that advances in genetic technology will result in couples using this new knowledge to "design" babies who will have blue eyes, blond hair, or be good at playing the piano… It should not be forgotten that for couples at risk of passing on a genetic disease the concept of a "designer baby" means nothing more than a baby born free of the genetic threat hanging over their family.'

In January, the Human Fertilisation and Embryology Authority (HFEA) granted the first UK licence to carry out research on human embryos using the CRISPR genome-editing technique (see BioNews 837). And last month the Nuffield Council on Bioethics published its preliminary ethical review of the area (see BioNews 871).

Survey participants were also asked their views about how the technology should be regulated. Nearly all (97.4 percent) felt that there should be regulations in place to control the use of the technology. And the majority favoured a multiple stakeholder approach – involving patients, doctors, scientists and the government – in developing these regulations.

Genome editing offers the potential for treating genetic conditions. 'There are something like 7000 or 8000 genetic diseases where this is a potential tool for alleviating suffering,' said Kent. 'This scientific development is about creating the possibility to make precise alterations in faulty genes, to correct the spelling mistakes that result in dreadful diseases that blight the lives of children. From a parent's point of view – from a family point of view – if you could make a change that would remove the risk of having a child born with a sentence of premature death hanging over him or her, wouldn't you want to do it?'

On Wednesday 7 December 2017, genome editing and embryo research will be debated at the Progress Educational Trust's public conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond'.

Click here for full for full details, including the conference agenda and how to book your tickets, and email with any queries.

Genome editing technologies: The patient perspective
Genetic Alliance UK |  23 November 2016
Report launch 'Genome Editing: The Patient Perspective'
Genetic Alliance UK (press release) |  23 November 2016
The Today Programme
BBC Radio 4 |  23 November 2016
21 August 2017 - by Dr Rachel Huddart 
A new survey suggests that Americans are becoming more accepting of the use of genome editing in humans, and there is strong support for more public involvement in discussions on the technology...
14 November 2016 - by Rachel Siden 
This podcast from the Guardian's Science Weekly series is a good introduction to the ethical questions surrounding genetic technologies...
7 November 2016 - by Annabel Slater 
Dr John Parrington thinks the ethics of genome editing should be shaped by scientifically informed public debate, and he hopes his book will provide a starting point...
31 October 2016 - by Jen Willows 
The Nuffield Council on Bioethics presented its preliminary report 'Genome editing: an ethical review' in the genteel surroundings of the Royal Geographical Society in South Kensington...
3 October 2016 - by Rachel Siden 
Use of genome editing in human reproduction requires 'urgent ethical scrutiny', according to a report published by the Nuffield Council on Bioethics...
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