DNA Editing: Future therapy for genetic conditions?

DNA Editing: Future therapy for genetic conditions?

DNA EditingIt can’t have escaped your notice that in the past few days the latest development in DNA editing has featured heavily in the media as news emerged of scientists from the USA and South Korea successfully removing a piece of faulty DNA from an embryo. Not untypically, the story was greeted in certain sections of the media with dire warnings of designer babies and references to Aldous Huxley’s novel ‘Brave New World’ and its dystopian society built on the industrialisation of human life.

There are many questions still to be answered to address ethical and political concerns as gene therapy develops. However, it is important to realise that this particular advance, although important, doesn’t mean that DNA editing is likely to be used therapeutically anytime soon.  Wouldn’t it be nice if in the meantime, instead of stories of the rich in our society being able to determine the eye colour of their children, the media focused on the potential benefits to people who live with debilitating, life limiting genetic conditions such as PKD, Alport Syndrome or any of the other kidney diseases with a genetic component?

Is there anything we can do now?

Yes there is for those of us with PKD or Alport Syndrome. The 100,000 Genomes Project is recruiting patients with those conditions (and many others) to give a small blood sample so that the genetic structures that trigger these conditions can be identified.  Salford Royal’s renal researchers are recruiting into the study but the deadline is March 2018 to enrol.  Manchester Royal recruits patients into the project too although I’m unsure if they have the same cut off date for recruitment as Salford Royal.

Who should join?

Anyone who has one of the conditions being studied.  I joined in the hope that the study would be able to help future generations.  My son has already inherited ADPKD from me and he recently had his first child although it will be a few years before we know if he too has inherited the condition.  You may not have children of your own yet but this is your chance to influence the potential benefits of this exciting technology to future generations and help society as a whole to make informed decisions on how these therapies should be used. To get involved simply ask your renal consultant about the 100,000 Genomes Project.

Why did the 100,000 Genomes Project start?

For the same reasons I enrolled but this concerned parent just happened to be the then Prime Minister, David Cameron.  You can see him explain it all in the video below. Please consider joining this important study; 31,750 genomes have been sequenced up to July 1st, 2017. Let us ensure that genetic kidney diseases feature heavily in this project.

 

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for the BKPA and my interests, other than my role within GMKIN, include sport, music and politics . Follow me on Twitter: @finnigr

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