Nick

Age at interview: 52

Brief Outline:

Nick’s daughter Heather and his wife Julie both have a condition where their hair doesn’t grow. He took part in the 100,000 Genomes Project along with his wife and daughter in the hope to help them find out more about their condition.

Background:

Nick is married to Julie and they have one daughter. He works as a regional business manager. He is White English.

More about me...

Nick’s wife Julie has a condition where her hair doesn’t grow. He remembers when his daughter Heather was born that she had no hair at all and this “alerted” him that she might have the same condition. Nick did lots of background research on the condition, finding out what he could, and recalls going to see lots of different doctors and specialists with Heather when she was a toddler. Nick says that as he doesn’t have the condition himself, “I felt like I was looking in from the outside a little bit”. 

When Nick’s daughter Heather got the call asking if they would like to take part in the 100,000 Genomes Project, Nick said “my view is - just do it, what have we got to lose?” He feels that although he doesn’t have the condition, he couldn’t see many downsides to taking part. He travelled with his wife and daughter and gave a blood sample at the hospital. Nick says that their whole genome is being sequenced and he has taken part because his genome will be used as a “control” to see how his genes compare to Heathers. 

Nick feels strongly that he would like to support any future genetic research. Both his wife’s career and his own involve research so they understand the process and the importance of getting good quality data and a large sample. Nick says he also wanted to take part because he would like to help any future generations of their family find out more about the condition. He feels, “I just want to help in my little way.”

Nick’s daughter talked to him about deciding whether or not to take part in the Genomes project. They did a Google search to check it was genuine because the invitation had come out of the blue.

I remember Heather, the day she got it, she forwarded the email to me and says "Dad, what do you think?" And at first I was sceptically thinking ‘is it junk mail, is it?’

Yeah.

Because it’s out of the blue. But the more we looked at it, did a quick few Google searches to make sure everything was genuine. It was genuine, obviously it was genuine. And we just sat down, and I said "Well, what have we got to lose?"

Mmm.

The best thing that could come out of it, you could have a wonder treatment that could happen. I know that’s highly unlikely. But at least it’s there to help further genetic research. It’s there to help you and the future generations. Yeah.

Through his own work experience Nick believes that commercial companies will use the data to look at trends and they will not be interested in individual cases.

Obviously, the information is being stored centrally. It’s been - how it’s been presented, because they said it will be made available to other commercial organisations. But it would be anonymised (de-identified), in that it would be given – for a better way of thinking a code number, rather than your name. So you can’t be identified from it, but the information is there. So I’m guessing from that, they’re looking for background information as to the level of the population that maybe have the breast cancer gene, or other genetic problems, so that you can have a background information. Particularly on recessive genes, where there could be an underlying issue there that we’re not aware of.

Yeah.

And that’s just, that was my understanding. I’m probably reading too much into it, but yeah.

And how do you feel about that, sort of the potential for commercial companies knowing that? You said about the data would be anonymised (de-identified). How do you feel about commercial companies?

[Laughing] no issue whatsoever [laughing].

And why is that? 

Probably from my commercial background. In that I know that the information is there, used. It tends to be, it is used just purely for the data purposes. Looking at it from a similar perspective of how I’ve done it previously in work, is that all you’re interested in is the results that you get from it. You don’t care if it’s Joe Bloggs, or whoever. You’re looking for the trends to find out why. Yeah.

Nick would rather know if he is predisposed to develop a condition, even if it is untreatable. He was told it would take about a year to process each sample.

So in terms of results what did they sort of tell you about the results of the project?

They said the results will take about twelve months to come through. That the Hundred Thousand samples have to be processed. It does take a period of time to do each sample. So we’re aware that it will take quite some time to process all them samples. And they did say they would let you know if you were predisposed to any condition that they have treatments for. If there isn’t any treatment, ethically they are not able to do that. Personally, even there, I would prefer to know. You can make - again, you can make informed decisions. 

Oh, that’s interesting. So they said if there wasn’t a treatment for –

A particular condition. They’re not able to tell you. Because ethically it’s not - you’re giving somebody a worry that you can’t do anything about. But personally I’d, even in that situation, I would rather know.

Nick suggests that the genetics programme could feedback to all participants about the project’s progress through a press release, newsletter or through social media.

One thing I would say is to have a newsletter say once a quarter, or whatever. Just giving a - to all the participants. Letting them know where the process is at. A generic process. We know it’s harder to do it on a one to one basis, but how many have been processed, and what advances have come out of it. We know there has been a couple because we’ve seen it on the BBC website. But it would be nice for the genetics programme to let us know. And maybe to put out press releases or Twitter feed, or whatever. What’s happening, what they’ve found. Because it’s good, it shows that the work they're doing is giving valuable resource. It’s not all the scare stories you see in the media about the ethics. The reason why the genetics research is there is to make the conditions detectable, find out treatment for them if possible, and to keep you informed. So that if it was say a cancer gene, you can be found out at an early stage.