This is a very exciting and very challenging programme, it enables us to
harness the fantastic advances that there have been in our scientific ability to
sequence large amounts of DNA and we're now facing the even greater challenges
of trying to interpret all the sequence data that's been generated in order to
look for alterations in the DNA that will help us understand the cause of
conditions in various patients who've been recruited to the project.
Our process for consenting patients has been evolving over the last couple of
years and is constantly changing and it's very helpful to have feedback from
patients to find out how did they find it, what did it feel like when they were
first approached and offered recruitment to the project, do they feel that they
had easy access to the sort of information that they needed in order to
make a decision, did they have plenty of opportunities to ask questions
afterwards and have we managed their expectations in a realistic way so that
they understand why it might be a very long time before they get any results.
Well really because I was very very interested in in you know helping in
some way maybe future people that have similar conditions to what I've got, also
I've got a concern within the family, I've got a brother and sister that at
the moment aren't presenting in any way as having anything but they they could
have so it may well, they are not involved in the project at all, but it
might inform them and we've all got children, I've got a daughter so I think
you know for future generations as well not just within my family but perhaps
other other people's families that have similar conditions and also my wife is
obviously very anxious about my health and potentially her daughter, our
daughter, so I think it would be really interesting to be involved and,
and you know hopefully there can be positive outcomes from it.
The benefit to others, the benefit to myself and helping to be more clear in what, in treatments
that may be available to me further down the line for anything that may be
detected or diagnosed and I'm also curious about the project I've been
aware of genome testing for quite some time but I've never really looked into
it so when it came up as an option I was quite, as I say curiostity and inquisitiveness.
So I had a sister who was diagnosed with cancer and the
diagnosis came late and it was too late to treat her so that's sort of a lesson
for me that you know it's better to know than not to know.
I joined a programme because my son, who's 12 years old, has a number of health issues that have really not
been resolved and following a number of tests I was invited to join the project
and I'm certainly very interested to know whether there is any
genetic connection really and I think generally I'm just interested in in the
scope of the project.
Well wouldn't it be lovely to find some some results that
make a difference in the long run where we can predict and avoid sicknesses and illnesses.
I suppose the main concern I had was
what happens with this information and whether it could adversely affect myself
my son or my family in some other way in the future in terms of their ability
to be insured for example so I, but I've been reassured that that's that
seems to have been anticipated and I've got confidence in the, in the project and
the staff running it so we go from there.
The concerns were to remain anonymous
apart from that no concerns whatsoever I find it an exciting project to be
involved with and you know I just think we had to put trust in the personnel
involved to make sure that we do remain anonymous.
What I found was really really reassuring
to just be around a table meeting other people that are invovled in the project
and, you know, hearing a little bit about their stories, I mean
nobody really revealed too much, but you know people did go into a little bit of
detail about what their experiences have been and what their concerns are and it's,
it's quite nice to hear other people's concerns and in a way feel like
that most of us have similar concerns and there's reassurance in realising
that there are other people feeling similarly about the different issues
that you might get when you're involved or when you've got a medical condition
that no one can really explain.
It was interesting to meet the other patients
and to hear why they're there, here, and people have come for a number of
different reasons and I think that's really interesting and I think what I
also learnt today was just how, how huge this is and its potential hopefully to
improve people's lives so I'm happy to be part of it.