Will Navaie: Genomics 101 - What is 'ethics'?

In this explainer episode, we’ve asked Will Navaie, Head of
Ethics Operations at Genomics England, to explain what ethics is
and why it's important, in the context of genomics.


You can also find a series of short videos explaining some of the
common terms you might encounter about genomics on our YouTube
channel.


If you’ve got any questions, or have any other topics you’d like
us to explain, feel free to contact us on
info@genomicsengland.co.uk.


Want to find out more? Check out the blog 'Genomics 101: What is
ethics?'.


You can download the transcript or read it below.


Naimah: What is ethics? Today I’m joined by Will Navaie, who’s
Head of Ethics Operations at Genomics England, to find out
more. 


Will: Ethics is part of philosophy, and it’s part of philosophy
that talks through a set of moral principles that govern our
behaviour and our conduct. So, it might be thinking about whether
something is good or bad. It might be thinking about whether
something is good or better, or whether something is bad and
worse. So, it’s about values and how we demonstrate those values
kind of in a moral framework. So, I like to think of ethics as,
just because you can do something, it doesn’t mean that you
should do something. So, the law dictates to us what we can do,
but ethics then talks about actually you need to look at the
context around a law and to see whether something is reasonable,
and so ethics to me is the should. So, should we do something?
Just because we can do something, it doesn’t mean that we
necessarily should do that thing. 


So, in medical ethics, we have four pillars or four areas that we
concentrate on. One is justice, and that’s making sure that
something is fair and equitable and inclusive. And equity being
the key here, so equity recognises that individuals have
different circumstances, and equity allocates opportunities based
on the needs of the individual. So, it’s not about giving
everybody the same, but it’s recognising that to get an equal
outcome for something, that some people will require more of
something because of their set of circumstances. We also have
autonomy, and autonomy in medical ethics is a bit of a focus
sometimes, and what that is, is giving choices and respecting
people’s decisions around that choice. Consent, we talk about a
lot in medical ethics, but it is not the be all and end all. It’s
really important, but actually it’s one principle among many that
kind of make up ethics. 


Another one of those four is beneficence, and that’s talking
about everything we do must create benefit for people, and that
benefit might be at an individual level, it might be at a
societal level, so there’s lots of different ways of realising
benefit. And the other, which is the flipside of that, is
non-maleficence, and that’s making sure that everything we do
doesn’t cause any harm to people. 


Naimah: Okay, and then so if we’re thinking about ethics in the
context of genomics, what does that mean? 


Will: So, those four principles that we just talked about are
applied to genomics as much as anything else, so there’s no
exceptionalism to those, so we live by those four pillars, if you
like. But what does make things complicated in genomics is that
genomic data is not just about you. It’s not just about an
individual. It’s about your family, it’s about your future
family, and what that means is that we need to take those four
pillars, those four areas, and look at them through a lens of a
group rather than an individual. Where it becomes more
complicated is the kind of interface between the law and ethics,
and the way that the laws are written in this country and in
healthcare are very much around individual rights, and that
becomes really tricky when the decision making of an individual
can affect other people in their family. And so, what we try to
do is to think about how we can influence behaviour that we want
to see. So, the law says an individual has to give their consent
for a thing to happen. What we do is we take a step back and we
say, “okay, but because there’s other people involved, we need to
respect that.” 


And so, we’re constantly thinking about how can we influence the
behaviour that we want to see. So, we might say, “when you are
thinking about whether you want to take part in medical research,
or genomic medical research, you might want to speak to your
family about this. You might want to speak to your children about
this, because it does have implications on them.” And so again
we’re using the sort of vehicle of consent to try and nudge those
behaviours that we want to see. So again, it’s this kind of
ethics complementing the law. So, the law’s not really working –
it’s working to protect an individual, but it’s not necessarily
respecting everybody, and so we just try to kind of affect those
behaviours as much as we can. 


Naimah: Okay, and then what’s the best way to demonstrate
ethics? 


Will: I think that’s a really interesting question, and I think
it’s really important because ethics being part of philosophy
means that very clever people have lots of opinions, and write
lots of things, and there’s lots of words around ethics, but
actually the really important thing is demonstrating that. So, in
order to kind of build trust in something, you need to be able to
demonstrate your trustworthiness, and i think the best way to do
that is really through public engagement. If you don’t understand
what people expect of you, it is not your role to tell people
what to expect. It’s your role to listen and see what people
expect of you, and once you understand what people expect of you,
you then know how to act, how to behave in line with what people
want from you, rather than telling people what to expect. So, in
medical ethics, we talk about – or in healthcare in general, we
talk about doing things with people, not to people, and i think
the best way to demonstrate that is to listen. It’s to engage.
It’s to act upon what the public are telling you, and sometimes
those aren’t the things that you want to hear. But that’s how we
make improvements. That’s how we build trust. 


I think a really good example of this from Genomics England is
the newborns programme. In ethics, we talk about the needs of
science should never outweigh the needs of society, and
scientists have said, “we think genomics can help with newborn
screening and diagnosis of rare diseases.” So, what we’ve done is
said, “okay, science has said this, we think that we can make
improvements, but actually we now need to go and see what society
thinks about this. Is it acceptable? If it is acceptable, what
are people’s thresholds for what we can do? And so the whole
programme and the generation study has all been driven by user
involvement, public involvement, and we have learnt so much, and
we’ve adapted our approach so much to that. And i think that it’s
a really good way of us demonstrating that we have listened and
that we have acted upon what we’ve heard. I’m really proud of the
way that ethics has been actually genuinely embedded in the
decision making around that. 


Naimah: That was Will Navaie, explaining what we mean by ethics.
I’ve been your host, Naimah Callachand, and if you want to hear
more explainer episodes like this, you can find them on our
website at www.genomicsengland.co.uk. Thank you for
listening.