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’sve 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’sve 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.

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’st be identified from it, but the information is there. So I’m guessing from that, they’sre 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’sre 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’sve done it previously in work, is that all you’sre interested in is the results that you get from it. You don’st care if it’s Joe Bloggs, or whoever. You’sre looking for the trends to find out why. Yeah.

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’sre 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’st 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’st a treatment for

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

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?’s

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.