Nicky Campbell presents topical debate from Bath Spa University, Bath. Is social media beyond control? Should we presume consent for organ donation in England?
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Today on The Big Questions...
Can you have the good
without the bad?
And Max's Law.
Should you have to opt out of being
on the organ donor register?
Good morning, I'm Nicky Campbell,
welcome to The Big Questions.
Today, we're live from
Bath Spa University.
to The Big Questions.
The online world of Twitter,
FaceBook, Snapchat and many other
sites, where ideas and comments can
be posted and pictures shared,
is probably the biggest change
to have affected our daily lives
since the advent of television
or the mobile phone.
People across the globe can share
what is happening to them
with friends and complete strangers
in an instant.
entertainers, artists and conmen
all have an easy way
to peddle their ideas
and wares direct to you,
24 hours a day, wherever you are.
The snag is there is no editorial
control, there are no real systems
to filter out the fake news
or the scams.
Indeed, fake news is often used
to direct the unwary
viewer to the scams.
And while it can bring
people closer together,
it can also be highly divisive,
pitting groups against each other
and unleashing storms of abuse
on hapless individuals.
Is social media beyond control?
Laura, welcome to The Big Questions,
PhD researcher in social media. Out
of control, isn't that the point,
the wonderful thing about social
I am with you, social media
is a wonderful thing, but it has got
to the point where it is well beyond
control. In the last general
election, we were exposed the amount
of abuse social media can it bring,
MPs spoke about the amount of abuse
they experienced, and that exposed
that actually social media can be a
threat to democracy. I have had the
pleasure of interviewing politicians
and candidates and I remember a
candidate speaking to me openly
about the abuse she received and she
turned around and said, if I had
children, I would not put myself in
this position, and that is a threat
to our democracy, we are segregating
certain people from going forward in
our political system.
is it beyond control,
is it beyond control, can it be
controlled, should it be controlled?
The other side, a great force for
democratisation, it has given people
a voice, a fantastic thing, don't we
have to accept it, uncomfortable as
it is, because of the good?
bring good and campaigns have been
won solely online, The Everyday
Sexism Project, brilliant, but there
has to be restrictions. I am all for
freedom of expression. But that is
The establishment is
rattled. It has rattled their cage.
If you start talking about
restrictions, we smell a rat. Does
everybody smell a rat? OK. Let us
not move onto the next debate quite
Ben? A threat to democracy, but
there is a real problem here which
is a case in India last July, seven
guys beaten to death by a mob
because of a fake story on WhatsApp,
that they were a child abductors.
Same thing happened in the US, the
story Hillary Clinton was running a
paedophile ring from the basement of
a pizzeria. An American guy went in
with an assault rifle and started
firing. What happens online does not
stay online and it can have real
life and real death consequences.
it a new thing, and amplified thing
now of that there is no doubt? But
what about online abuse, Emily?
People who do not want to go into
politics because of vile stuff they
are receiving something has to be
Nothing has to be done. People
use social media for good, the
overwhelming majority. As is the
case in public life, there is a flip
side, there will always be people
who are nasty and abusive, but I
would say no
would say no regulation, any
regulation who was the person who
decides what is the truth, the line
of what people can and cannot say?
That worries me, deeply concerning,
that there will be gatekeepers and
the right opinion. People get
abused, deeply unpleasant. But it is
a small drop in the massive ocean of
good social media does in connecting
Obviously, abuse happens on
the street, but if you look at the
type of abuse going on on social
media, I would argue very little of
that happens on the street. Could
you imagine, for example, Jess
Phillips, an MP in Birmingham, she
spoke out about receiving 600
threats of rape in one night alone
on Twitter. Could you imagine
someone in the street stood there
well someone screamed threats of
rape at you?
Death threats as well.
Have you had any?
I have. I ran a
press freedom campaign and I
received thousands in the night.
Death threats? Death threats, rape,
misogynistic abuse. The difference
between that and on the street, for
example, I could turn off Twitter
and it was quite a powerful feeling,
thinking that, actually, this stuff
is really unpleasant and no one is
saying it is nice. I turned it off,
my phone, and it stopped.
the dominance of social media, you
are saying, the best way to overcome
abuse is switching it off, well, is
that actually controlling it,
switching it off? If we look at the
last general election, social media
dominated. Fair MPs, they campaigned
quite -- for MPs, they campaigned a
lot on social media. If you said,
you do not want to receive the
threats online, switch off social
media, would that MPs be in
That is not the only
option. If you are the victim of
abuse, you do have ultimate control,
you can turn it off, mute people,
ignore them, it is not a tangible
threat. It is not pleasant and no
one reading through the tweets or
messages is thinking, this is great
fun, but you are in control, it is
not a real threat to your life.
the audience, what would you like to
We are assuming the mainstream
media is not out of control. MSM.
They are owned by the corrupt elite,
brainwashing us for years.
mainstream news, we are saying it is
real, I would much rather go to
YouTube and look at Russell Brand to
find out the truth behind something
rather than immediately believing
the newspaper. Taking some of the
responsibility, like the lady said,
the social media is about the people
and taking control and learning to
be... Learning how to recognise if
something is real or fake, we should
be teaching it in schools, and
teaching about media, so that we can
look at something, is that the
Russell, that is a good
point, that is a load of baloney?
look at what he has come his
history, background, belief systems,
And it is your belief
It might, but it might
You and Russell are
in a bubble.
My views have changed
massively since I was young and
Socialist worker and now I am in my
40s, totally different beliefs, I
have children, things change. I
would love my children to be
inquisitive, even when it comes to
TV adverts, not much difference
between TV adverts and Instagram.
The mainstream media, people do not
trust the mainstream media anymore,
There is a conspiracy theory
they are peddling the same story.
Try to find the Telegraph and the
Guardian agreeing on anything. They
have hundreds of years of tradition
and there is a system in place, fact
checkers. A couple of times they
have one stories I have done and it
has taken time to get through
because they are checking every
link. There is a process. There is a
fact checking process, correction
This is dangerous.
dangerous? Can I introduce you?
Presenter of arty, used to be Russia
Today, Afshin Rattansi.
Today, Afshin Rattansi. -- presenter
of RT. The reason there is fertile
ground for the fake news is because
the public have lost faith in the
media. It is finished. That is why
RT is doing well, maybe even Donald
Trump is doing well. The reason why
it is these publications, whether
the Iraq war, Afghanistan war,
Libyan war, issues of war and
Was it a problem with the
BBC? The BBC just about got close
They fired me, they fired the
Director General. We could see we
were being told by the Government to
persuade the people into war. The
Guardian, the Observer, they
supported the same thing.
Interesting, but on the point... A
lot comes back to Russia, how much
of a problem, a danger even, are RT?
In terms of their viewing, very
small, the figures, 0.4% at the time
of being watched, in terms of the
impact, there are orders of
magnitude second and third and what
we have seen as a full-scale attempt
to undermine the mainstream media.
And on... The public response to us.
So does Ofcom.
Ofcom has complained
against the BBC for more than RT.
When it gets down to media,
partiality, overall, you are right,
Ofcom have lots of... They deal with
nudity, inappropriate language.
Violations of journalistic
standards, the observation further
due accuracy and impartiality,
#MeToo has had more programmes found
guilty of violating those standards
-- RT has had more programmes found
I would say... I worked
there. I have a TV show. No one has
told me what to do.
But your chief
editor refers to RT as the
information weapon. In an interview
It is a weapon for the
poor and dispossessed. We interview
the worker in the factory, not the
CPO. It weapon
CPO. It weapon the work adopted
2008, she said, we are fighting war
against the entire Western world --
in an interview in 2008. I think
those comments were taken completely
Let us take it back to
social media, what are the Russians
doing with bots and trolls. Bots our
automated accounts. What we saw from
Russia was an outfit called the
internet research agency in St
Petersburg won in 3500 patrol
Twitter accounts, fake Facebook
accounts, masquerading as Americans
on both sides of the political
divide, a lot of the content was
anti-migrant, white supremacist.
lot of the comment was black lives
matter, saying white supremacists
are evil, I would not necessarily
disagree with that, but pushing both
sides. In May, 2016, the troll
factory in St Petersburg ordered two
simultaneous rallies in Houston, one
protesting against the opening of an
Islamic cultural centre and one in
The Soviets used to do this,
active measures. Propaganda. They
spread the rumour that HIV was
created by the CIA. They kicked off
the stuff about the Kennedy
conspiracy. What is the problem? The
same as it ever was, the scale of
The scale and the directness.
There were cases from Robert
Mueller's indictment, the troll
factory is was interacting with real
Americans through social media and
organising campaign rallies, the
troll factory paid people to turn
up, dressed as Hillary Clinton in
jail. You had direct contact between
Russian agents in St Petersburg and
Americans on the ground, not a case
of collusion, people being fooled.
This is dangerous. Will Moy.
interesting how much the world has
changed since we started Full Fact.
When we started, you could latest
every outlet in the country, that
day is over now. It means all of us
can tell people what we think and
what we know about the world, we can
share those ideas, it is exciting,
but it is much harder for all of us
because things are coming to you
from 1000 different places and you
do not know the track record, you
have to do more work to figure it
out. The every link being fact
checked, what Ben said, I'm sorry,
that is not possible. Some are
clinging onto enough money to do
that, but most are publishing stuff
too quickly to make that possible.
That is what Full Fact does. We
publish links to every review so
that you can judge it for yourself
and this is where we will have to
end up. If you want someone to trust
you, it will not be enough to say, I
am so-and-so, take my word. It will
have to be, I can show you where you
got it from, you can judge it.
people interested in checking it
out? It is not critical thinking, it
is wishful thinking. In a sense. You
see stuff you want to think is true
and you disregard the rest.
We will all do that, of course.
On the BBC, we get both sides of it.
We have always tended to look for
things we agree with, when we choose
what newspaper to buy, we used to
choose because we liked its views.
I buy things I disagree with.
But most of us are human, we look
for things that we agree with. That
is not a new challenge. We have to
look on the Internet, it is about
all of us having conversations with
each other, but there are parts of
it from a news point of view which
aren't just all of us having
conversations with ourselves. When
it comes to people paying money in
secret to target adverts to
particular parts of the population,
you don't know who, that is new and
an exercise of power and it is
reasonable to ask who is doing it
and it should be transparent.
Tell us the outlets you trust.
First, Steve, if it is beyond
control, is there any hope of doing
anything to rein in not just the
abusers but also the fake news
We need to design and architecture
that is more conducive to
high-quality information rather than
fake news. I share the same concerns
about censorship, determining what
is fake news.
We have to understand people respond
to information, how Facebook and
Twitter can be used, and the idea of
targeting specific individuals based
on their personality is a real risk
to democracy. The reason that is it
is happening in private. No one else
knows what this person has perceived
in terms of information. That is
qualitatively different from the way
things used to be where parties
would put up billboards next to the
road and we could all see them and
knew what the message was. We now
have the technology and it isn't the
Russians, but right here in the UK.
They are designing custom designed
messages shown to people on
Facebook. We don't know to what
extent they are customised.
Of the British Government doing it
in the same way albeit on a smaller
I am not talking about governments.
Do we have a mirror image to what
Vladimir Putin is doing.
I am not an expert.
I am not an expert.
And what was
The man who has
the billion-dollar contract...
say one other element which is
related, this started with four
companies, Snapchat, Twitter...
There is censorship going on. It is
not as free as you make out. The
idea of fake news as a price to pay
for a free Internet, these companies
are censoring Google search terms,
lots of people saying the articles
that are not the mainstream, the
Atlantic Council, the pro-NATO
organisations, they are given
preferential treatment. In the case
of harassment everyone here would
say these companies have to do more.
There are not democratically...
Steve, finish your point. The
algorithms thing, you go on Amazon,
you buy a book, it tells you the
same set of books you should buy. It
doesn't give you the psychological
impetus to break away.
That is right but it is an
opportunity, we have the technology
to change algorithms and make
suggestions to people on Amazon
taking something is -- outside their
comfort zone. I like this, and I
wish I had the money to buy them.
But for society it would be better
for Amazon to tell me a book I would
Exactly right. That is the avenue we
should pursue, to think about clever
ways to broaden people's access to
information without censorship.
Editorial control, and the situation
in Germany as well.
What would you like to say?
we trust? Regarding fake news, it is
a subjective thing, and what is the
real definition CNN? It is a slur
which has no objective meaning. As
it is used it only means a news
source I personally disagree with.
Is it not used to...
But if you check the facts behind
the story? I was try to get you some
Thank you. Fake news is now a term
used to abuse journalists when they
hold politicians to account which is
a bad thing.
Does it have a precise
We need to recognise
there are lots of separate problems.
It started when people noticed there
were teenagers in places like
Macedonia publishing made up stories
to get advertising. That was one
kind of fake news. Another kind is
where you take real data about the
economy, you distort it for your
political campaign. If you put both
of those in one bucket we will never
solve anything. One of them is part
You can check a fat, the side of a
bus, £350 million for the NHS, that
is not fake news but a claim you can
Absolutely -- you can check a
sacked. -- fact. We can check the
legal basis, all of that for you.
I don't know what your political is
for establishing a procedure to
investigate whether a story is true.
Journalism is a qualitative process,
to obtain information. You don't
have hard metrics for establishing
whether it is true. Four. You are
talking about other people's
journalistic procedures which comes
down to the same procedures
fore-checking whether something is
true. There is rarely a
fundamentally absolutely objective
truth underlying any story and it is
not obvious that is something that
can be obtained simply, quickly,
efficiently by a public or private
agency who happens to have some
greater measure of the tooth.
Lord McAlpine when he was labelled,
there was an objective truth
underneath that which led to the
court room. Steve?
There is a real risk by saying, no
one knows what the truth is, we are
throwing up our hands and saying it
-- there is too much information,
something which has been happening
on social media and culprit is
making that claim in what I call a
shock and chaos approach to fake
news. At the moment we give up on
this idea that there are certain
things we can check like the
full-scale about the £350 million.
And it was false. But the point is,
there are certain things that are
false and other certain things that
are true. The no group -- the
inauguration of crowd for Trump.
have an innate ability to critically
look at things for us to decide for
ourselves what is true.
. Do we have
that critical ability? It is the
same thing we accuse young jihadists
who are radicalised. Maybe we are
all losing the ability. Some people
still stand by the 350 figure, as a
gross figure, saying that is about
the amount of money we can put in.
Let us point out lots of things are
true and false, lots more important
things we don't know. A large part
of what we are doing is to say this
is as much as we do know and don't
know, be put the shades of grey back
I want to come to you.
with fake news, a lot of times it
will come up on your social media
profile and you will read the
headline, how many go on to click?
As soon as you click you might
realise it is fake news. They will
read the headline, I know people who
then actively go on to share it and
believe that is true.
Facebook made a profit of £39
billion. You might say that is
terrible. But these adverts, they
are making money, some money.
me, social networking companies
should be held to account. We
mentioned education and the
Government have put forward in their
green paper about compulsory
education within schools with regard
to social media. I believe that is
one way forward in that we should be
educating. We have a whole
generation that had been brought up
with social media. They don't know a
life without social media. Shouldn't
we be educating them on social
How do you counteract the business
model? There is a big paradox which
relies on the fakery?
That is right, this is where you
have the bleeding and from social to
traditional media, so much that goes
on is emotional targeting. Someone
will put out a scare headline to get
people afraid and they will click on
it and then realised the story is a
Sometimes it is not.
Sometimes it is true. Look at the
tabloids, they have been doing this
for decades, there is emotional
Every reason why we
Yes, lots of things are true. We are
not machines, the world is really
new now, and historically every time
new communications technology has
come up people have panicked and
tried to limit it. When it comes to
the app -- the opportunity tabloids
we need to be careful.
difference between what the tabloids
used to do and Facebook now, one of
the really important things we know
from cognitive science about why
people stick to their beliefs is
because they think they are widely
shared. With social media we have an
opportunity for anyone, no matter
how absurd their belief, that they
can find a community, like-minded
people on the Internet, and think
their belief is widely shared.
People at their seriously think the
earth is flat. You can go on to
Facebook and have a community of a
thousand people around the world.
are doing that debate next week!
So you will be resistant to changing
300 years ago...
The last word? Google is one of the
most powerful companies and is
already censoring it, it's not free
at the moment. From WikiLeaks, we
know Google works with Hillary
Clinton, you mentioned four
corporations, this far away from the
dream of the Internet it should be
free. These are multi-billion dollar
company is censoring already.
We need regulation to stop it?
we nationalised the telephone
company here, or the post office, we
can nationalise some of these so
they can come under democratic
organisations in the pocket of the
Not in the pocket of the
accountable. Thank your very much
Thank you for your thoughts on that
You can join in all this
morning's debates by logging
on to bbc.co.uk/thebigquestions,
and following the link
to the online discussion.
Or you can tweet using
the hashtag #bbctbq.
Tell us what you think
about our last Big Question too.
Should we presume consent for organ
donations in England?
And if you'd like to apply
to be in the audience
at a future show, you
can email [email protected]
We're in Edinburgh next week,
then Newport in South Wales
on March 11th, and Brighton
the week after that.
Friday saw a successful Second
Reading of Geoffrey Robinson's bill
to change the basis of the organ
donor register to one
of presumed consent in England.
The Government is going to go
ahead with the idea.
Last autumn, Theresa May
indicated her strong support
of an opt-out system in a letter
to Max Johnson, a nine year old boy
who had received a heart transplant.
She said it would be
known as Max's Law.
But there are still several hurdles
to get across first,
not least whether a potential
donor's family should have a right
of veto when the final
decision must be made.
Think about that one.
Wales, just down the road
from here in Bath, changed
to an opt-out system two years ago.
It's fair to say the results
so far are mixed.
Should we presume consent for organ
donations in England?
Scotland is still waiting on this
one and trying to make up their
minds. Here is the thing, consultant
transplant surgeon, welcome, Mike
Stephens, I have signed up to the
register. As an adult, I expressed
wishes, as an autonomous human
being, but my wife or my daughters,
my mother, they could stop that
happening. How can that be right?
You cannot think of that happening
in any other sphere.
Well, if you
phrase it like that, it is not
right, but I think you need to look
at this in the context of the whole
discussion. It is interesting we
start the discussion here because
the family's role is unchanged in
the opt-out system in Wales. They
have the same role as in the opt-in
system in England. The family can
overrule their relative's wishes. I
think the language unionist in your
introduction is part of the issue --
unionist. You need to change that
around, really. To make it much more
about your decision. You make a
decision in life and make sure
people know what that decision is
and you make it clear about that and
then it is much more difficult for
families to go against that. The is
families are not overriding people's
wishes, decisions for the sake of
being awkward -- the truth is. They
do not want to make things
A period of intense
Absolutely. We are asking
families to make decisions that
probably the most emotional point in
their life. When you make a decision
when you are emotional, as we all
know, you do not always make good
decisions. Our research in Wales
shows that if you go back to
families who said no took organ
donation, a few months down the
line, many regret the decision. --
to organ donation.
It takes the
possibility of regret away?
it clear it is your decision as an
individual, you convey your decision
to your loved ones so they know what
it is because in that moment of
intense emotion, they are already
brief, unexpectedly bereaved,
normally, because that is what organ
donors tend to be. You are asking
them to make this decision. Imagine
a scenario whereby you have died,
your family are there, incredibly
upset, somebody comes in and says,
they were on the organ donor
register, you say, hang on, they
didn't tell me that, I and their
wife, I know everything about them,
why did they not discuss that with
me? I don't understand. They go
through the process of trying to
understand. Was this really
important to them? Was it just
something they did when they got a
does not show you have made a
Well, it doesn't, and the
key thing about all of this debate
is that what the law change has done
is given us a platform to have all
of these discussions, including
about what the family's role is, so
we can put it out there that you
have an opportunity to discuss your
decision in life and then your
relatives will know what to do.
cannot wait to hear from the
audience in a moment. A lot of that
will have resonated with you, tell
us what happened to your son?
son, Connor, he was 18 when he was
attacked, murdered. Three years ago.
As a result of his injuries being so
severe. Organ donation became an
option. He had decided that he did
agree with organ donation at the
time, he was only 16. He made that
decision. We had a conversation,
albeit brief, we had a conversation
about it. Never for one minute
thinking we would be put into that
position. And then we jumped forward
two years, that awful night became a
reality for us as a family and the
specialist donor nurse came to speak
to us, after lots of discussions
with the medical team, police, lots
of other individuals, to explain
that Conner would possibly be in a
position to become a donor and that
is when the conversation started. I
must say, I had a conversation with
Conner but his dad had not.
Initially, the reception we gave the
specialist donor nurse was quite
from me as a mum, Conner had been
through such a horrific ordeal, I
did not want any more pain for him.
I did not want him to be put through
anything more painful. So with the
specialist donor nurse, we talked
through lots and lots of scenarios,
questions, some of them might have
been really small and insignificant,
one of the biggest concerns for me
was, if we were to continue with
this journey, that Conner was never
on his own, and that was a really
big point for me and we had to
discuss it with
discuss it with her and never at any
point did we feel under pressure to
consent, we never felt under
pressure to continue, if we had made
a decision that we felt we needed to
pull back, then that was OK, that
was an option for us. But we made
the decision, Conner made the
decision, we just facilitated it. He
believed life goes on, his mantra in
Did that in a sense keep you
That kept us very focused.
had the tattoo on his arm. What did
Life goes on. His tattoo. It
was really poignant. But for us,
that kept us believing we were doing
the right thing. That is what it
was, for Conner, it was the right
decision. Emotionally, it wasn't
possibly for us at the time, but it
was about what Conner wanted and
that is what we did.
And lives were saved?
Knowing that, that amazing thing,
three lives were saved, what is that
It is awesome, to use Conner's
words. I remember a brief
conversation we had at the time and
he said, in his own naive
matter-of-fact way, who wouldn't
want a bit of this, mum? That was
his humour, his belief. To say I am
happy, it is the wrong expression.
But I am comfortable and I am
immensely proud that Conner make
Can I ask, if you had
not had a conversation with him
beforehand, what would your decision
has been on that night?
have been to continue to go through
the system. Conner was so strong
willed, stubborn, knowing his
personality, it was a difficult
decision, by no means was it easy,
but together, as a family, we would
have carried on through the journey.
Thoughts from the audience. Wow.
What would you like to say? I would
be interested as well, if there is
anyone here who would opt-out of the
As a medical student, I
had the recent privilege of seeing a
kidney transplant and just seeing
this small grey kidney going pink
before my eyes and start working,
this is astonishing, amazing. I
think donation is a wonderful thing
and the Catholic Church encourage it
as well. I think that is a great
thing. We are here to discuss how we
should increase the amount of
donors, I think most people in the
Presumed consent, what
are your thoughts specifically on
Not not system, one, it has no
clear evidence that will increase
donors? -- and opt-out system. In
some cases, it hasn't not increased
donors. It is morally dubious and it
is based upon this notion of
presumed consent which is
nonsensical. How can you say I have
said yes to something, I haven't?
have a man who knows about the
evidence, Professor Roy Thomas. You
have studied this, looked at the
evidence, what is it?
looking at the evidence in 2007 in
Wales and that is why we have the
law now and you have two connecting
groups. Connectivity being
important. Conner, the family, and
the donors. The recipients, and the
donors working together. It is
important to realise because we have
10,000 people waiting in the UK.
They call it the invisible death
row. The invisibility because they
do not have advocacy. Brave
families, like Conner's case, they
are important, they are only 1%.
When they say there is no moral
ethical guidance here, there is.
There is a moral base in Wales for
this, it is not about the law, that
is important. The third group, the
group that now can opt-out. That is
important as well. They can opt-out,
perhaps some people argue we say
opting out of humanity, maybe, that
is an argument point in moral
ethics, but the key thing is we duck
and discuss it in the round -- the
key thing is we look. The ethical
debate is important, as we are
having today, but most people want
this law now. Two thirds of the
people want this law because it
saves lives and there are 500 people
who died last year, five bosses went
over the cliffs of Dover, and that
is a big deal, it used to be one bus
in Wales -- five bosses went over
You put your hand up,
gentleman with the glasses, who
I would opt-out.
Organ donation is a very moral
thing. If you want to be moral and
ethical, do not force your morality
on me, that is unethical. It is
quite perverse we are to assume that
all women and children born after
this law passes, the government will
assume the rights to harvest their
organs like a demented keeper, a
disturbing precedent, not the role
of the state. Be moral, donate. But
do not force it on me.
I agree. My heart goes
out to Conner and his mother. It is
not some nightmare...
We are talking about
lives here, lives that can be saved
by that person making the choice, be
it for personal, spiritual or
religious reasons, they want to
opt-out, OK, but the assumption is
taken however, that we can save
human lives with their organs that
you have agreed to give up, should,
God forbid, the worst happen to you
or a member of your family. A very
important point for those who do not
agree with that, if it was one of
your loved ones that desperately
needed the organ, how would you feel
Anyone else who would opt-out?
I just want to know...
I am kind of
on the fence, brought up in the
Jewish faith we would not give
donations at that point in our life,
we can give live donations, it is
quite a contentious... Sorry?
Jewish leaders do not agree with
that. They looked deeper, they
The Jewish faith is quite
interesting insofar as there are
many beliefs and many different
interpretations, so what I am trying
to say is I have been brought up in
a belief we would not donate,
however, I have been living... I'm
finding this very emotive. My
11-year-old Sun is likely to need a
kidney transplant multiple times in
his life, currently going through
potential bladder reconstruction as
well, so for me to sit here and say
I would expect myself or someone
asked to donate to him but on death
Makes you more likely to
give than receive? Important point.
You have to look at this from so
many different angles. But I think
my inclination would be I would have
to say that I would not opt-out
although I do not believe in the
system being proposed, I believe
that if you are going to come in
with a system like that, the
transition state from how we
currently are to where you are
planning to go towards, it has to be
managed very carefully, you have to
know exactly what it is all about
and just to presume whether it
and just to presume whether it is at
16, 18, whatever age, the minute
your birthday comes, does that mean
you have to sign on the dotted line
to make sure God forbid you are not
caught in the two-year window?
Fascinating points. I will be right
with you. So interesting. As you
say, so moving too, thinking about
those situations. Sadly, heart
health campaigner, critical heart
condition, at any moment, you could
need a heart transplant, if a viable
heart was found in the family
decided ultimately not to consent
and to save your life, what would
that be like for you?
Of course that would be appalled but
I want to approach it a different
way. As a heart patient, everybody
says to me, surely you must be in
favour of the opt out system? I am
not in favour at all because it is
the word, presumed, that really
I have spent the year talking with
lots of decision makers who are
invested in this, charities, the
NHS, the team at Papworth Hospital,
and my conclusion is something that
everybody I am sure would agree
with, the most important part of the
process is having a conversation
with your loved ones. Going for
presumed consent can take away the
need for the conversation.
How to make sure we have those
I want a mandatory decision making
process. People have their own
thoughts and feelings and emotions
about this. This isn't about
bullying anybody into making the
decision. What this is about is
saying, you need to make a decision.
I have three children. When my
eldest son turned 18, he could vote
for the first time so we had a right
of passage conversation, who will
you vote for? He could drive, so we
discussed never drinking and
driving. As part of that rite of
passage, I think the majority of
families in this country will sit
down together and say, you are 18
now, you have to make a decision,
let us discuss this, this is a rite
of passage for you. You can tick yes
or no but you have to make a
decision and that forces the
conversation, encourages the
conversation in the family. The
heart transplant sessions I have
spoken to have said they have a care
for the patient but also how to care
for the family. They will never ruin
another life to save a rice -- save
a life. They will never go against
wishes because they are humans
themselves. They don't go into that
profession to cause damage and upset
I do not believe presumed consent is
the way to go. We have to make a
mandatory decision and then educate
from a very early age.
You don't approve of the opt out
Everyone here, we all believe in
organ donation, we will want to
increase organ donation and see more
transplants. My criticism is it
doesn't work. The evidence from the
Welsh Government report which was
still ambivalent, there has been no
change in the rate. There may be a
change in awareness and consent
rates have gone up but the hard
numbers has not happened. I am a
firm believer in organ donation. If
you are happy to receive a
transplant you should be happy to be
a donor. Any other position is
hypocritical. There are different
things we can do.
interesting. Am I right in saying
you think there should be a
prioritisation for those who have
I do. There are different
systems in the world. Certainly,
Israel edged used a system where
they bring this system of
reciprocity. -- have introduced a
system. There are our priority
points, if you are waiting for a
heart or liver, your medical aid
overrides everything. Kidney
transplantation where we do have
dialysis which is not as good...
should not be about the choices
people make in life.
And the NHS versus private?
The figures are really important.
This is fact, if we knew the answer
whether or not opt out what we would
have done it years ago. We don't
have strong statistical evidence to
prove it. We have got associations
but not strong evidence. We may get
it soon because of what has happened
in Wales. But the numbers are small
and the fluctuations of great. This
law change is about consent change,
a different way of consenting so the
only thing that is relevant in terms
of success is has the consent rate
gone up. Year on year since the
update -- the opt out was introduce
in Wales, the rates have gone up.
the statistics and arguments?
In Belgium in the mid-19 80s they
introduced opt out. They saw a 50%
increase in organ donation rates in
five years, a clear statistic there
for everyone to see. In the opt out
countries, Spain, Denmark, Norway,
they have a better organ donation
rate than we have in the UK. It is
important to look at that. Germany
hasn't, at the other end of the
scale. Facts show presumed consent
works and studies at Harvard,
Chicago, they showed these facts.
Presumed consent works.
usually cited as the perfect example
of presumed consent.
have an opt out register.
Belgium does. Wales has not shown
It is too early.
It is too early. We need
to take the right lessons from
Spain. The Spanish have said it has
nothing to do with presumed consent
but investment, education, raising
APPLAUSE We have done all those
things, we haven't had the consent
rate increase so it is time the
something else in addition.
I would like to say, I want to thank
my donor's family every day, really,
I had a liver transplant just over a
year ago. I was one of the lucky
ones with how quickly it happened.
From feeling just tired and being
told it was a virus, to going yellow
and having a life-saving transplant
two you -- weeks later. I got my
gift. Having said I don't agree with
opt out, there are Laverty points,
one is consent, the biggest one is
family. At the moment, even if you
haven't signed up to the register
your family can sign up for you.
say, my gift. Is it an important
concept that it was a gift?
can't even get close to what it
feels like when you wake up from a
I was 48 hours away, I was on a
super urgent list where your life is
I was at peace with the fact it
might not happen for me.
might not happen for me. When I got
woken up, I could breathe for
myself, my transplant coordinator
grabbed my hand and said, we have
found you a liver and it was the
most incredible feeling. There was
hope, it was amazing. Next thing, I
was woken up and it is like a
euphoria, you can't comprehend,
there are no words, when someone
else says the life. It is one thing
getting better, battling cancer, but
when someone else saves your life
for you, it changes everything. I
like to think I speak for all people
who have had transplants, we don't
go back to the lives we had before,
we are conscious of the
responsibility we had to the person
who helped keep us alive that we try
and live bigger and better and
richer lives. Organ donations are
incredibly important but it will
never be as simple as opt in or opt
out. Probably one year to the date
my donor died, my best friend's mum
died in the same situation and I saw
it from the other side. In that
moment I realised it is not clean
cut. But only are you so vulnerable,
in agony with grief, but she had
this huge hope, even if there is no
hope. You still think that maybe
they have got it wrong. That is a
huge thing. It is not simple. It has
to be a conversation, a change in
On the point about it is not simple
as opt in and opt out. In Wales we
have devised a resource pack due to
go out to bring about a conversation
with young adults around the subject
of organ donation. We give lots of
advice at school, mental health
advice, sexual health advice but no
one likes to talk about the other
side, the dark side of life. In this
pack, we have got a conversation
going within groups that will answer
those questions. Giving those young
people the knowledge it is OK not to
agree. There is no right or wrong
answer but furnishing them with the
information of the process. What are
the steps? If they feel they need to
know those. We spent a long time
asking lots of questions and that is
what the resource pack is for, to
give information and to use my son's
case as a living case. It does
matter, these early conversations
can make a difference.
The keyword you used, living.
That is it. Because three people are
alive because of your son.
It is really important we talked to
the young people it affects, don't
talk to those already buying into it
or on the donor list, but the young
people who need to sign up and don't
presume their consent, let them make
You are a professional, thank you!
As always, the debates will continue
online and on Twitter.
Next week we're in Edinburgh,
so do join us then.
But for now, it's goodbye from Bath
and have a great Sunday.