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Patient stories: the decision to share

Hear about one family's decision to share their genomic data - and what drove them to do so.
We didn’t know anything about Musa until two days after his birth.
They said: ‘You can go home now, no problem, with Musa; we just need to tick some boxes and check his general health.’ They checked the oxygen levels in his blood and they were about 88%.
and they said: ‘Oh there’s something wrong here.’ His general health looked ok, but after the echo test in intensive care they found loads of problems. The consultant sat down and tried to explain what was happening to Musa.
He said: ‘Musa’s heart has got a big hole.’ I think it was about 22 millimetres out of 30 millimetres of his whole heart.
And then I said: ‘What else, is that all?’
and they said: ‘No, there’s another problem, it’s called transposition of the great arteries’ which means that the oxygenated blood and non-oxygenated blood goes to the wrong place.
I said: ‘Are there any more problems?’
and they said: ‘Yes.’ He has something called double outlet right ventricle, which means, again, that all the tubes go to the wrong place.
And the last thing he said is pulmonary stenosis: the tube starts at 13 millimetres and goes to 3 millimetres, so it floods the lung with blood and he can’t stand it.
It was a shock for us.
I said: ‘Are these problems repairable, are they curable?’
and he said: ‘I’m afraid they are not.’ Our Prophet Mohammed, peace upon him, says that if you have one day of life and you have a plant you should plant it. Maybe you won’t benefit from it, you are going to die, but someone else may benefit from it. On that basis, I think if there’s anything I could do to help my child or others - it might be beneficial to my child from this research, or it might not - but I’m sure it will be beneficial for people in years to come.
Some people are worried that their data might be exposed - maybe to the public or used by commercial companies. As far as I’m concerned, commercial companies don’t bother me. If they benefit, it’s fine with me. As long as they make benefit to humanity - to people like Musa, my child - then I’m ok with it. Personally, I don’t like my data to be exposed, to be in the public domain, but if it’s contained within the research team and other researchers, I’m a researcher myself so I can understand that. I think it’s ok, I don’t worry about that.

As we have explored, the decision to share your data is a very personal one. In this video, we hear from a family taking part in the 100,000 Genomes Project about why they decided to share.

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Whole Genome Sequencing: Decoding the Language of Life and Health

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