What choices should we be able to make about designer babies? A Citizens' Jury of young people in South Wales - 3 views
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What choices should we be able to make about
designer babies? A Citizens' Jury of young people
in South Wales
Rachel Iredale BSocSc MA PhD,* Marcus Longley MA(Oxon) MScEcon PhD, Christian Thomas
BA MA and Anita Shaw BSc PhD§
*Senior Lecturer, School of Care Sciences, University of Glamorgan, Pontypridd, Professor of Applied Health Policy and
Associate Director, Welsh Institute for Health and Social Care, University of Glamorgan, Research Fellow, Wales Gene Park,
Cardiff and §Development Director, Techniquest, Cardiff, UK
Correspondence
Rachel Iredale
Genomics Policy Unit
School of Care Sciences
University of Glamorgan
Pontypridd
Mid Glamorgan
CF37 1DL
UK
E-mail: riredale@glam.ac.uk
Accepted for publication
30 January 2006
Keywords: Citizens Jury, decision
making, genetics, reproduction, Wales,
young people
Abstract
Background Young people will increasingly have the option of
using new technologies for reproductive decision making but their
voices are rarely heard in debates about acceptable public policy in
this area. Capturing the views of young people about potentially
esoteric topics, such as genetics, is difficult and methodologically
challenging.
Design A Citizens Jury is a deliberative process that presents a
question to a group of ordinary people, allows them to examine
evidence given by expert witnesses and personal testimonies and
arrive at a verdict. This Citizens Jury explored designer babies in
relation to inherited conditions, saviour siblings and sex selection
with young people.
Participants Fourteen young people aged 16-19 in Wales.
Results Acceptance of designer baby technology was purposespecific; it was perceived by participants to be acceptable for
preventing inherited conditions and to create a child to save a
sibling, but was not recommended for sex selection. Jurors stated
that permission should not depend on parents age, although some
measure of suitability should be assessed. Preventing potential
parents from going abroad was considered impractical. These young
people felt the Human Fertilisation and Embryology Authority
should have members under 20 and that the term designer baby was
not useful.
Conclusions Perspectives on the acceptability of this technology
were nuanced, and based on implicit value judgements about the
extent of individual benefit derived. Young people have valuable and
interesting contributions to make to the debate about genetics and
reproductive decision making and a variety of innovative methods
must be used to secure their involvement in decision-making
processes.
doi: 10.1111/j.1369-7625.2006.00387.x
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217 207Introduction
There has been much research on the public
understanding of genetics in the last decade.
1-7
It is sometimes suggested that the public
understanding of the new genetics is poor,
8
yet it
has been demonstrated that the public can hold
complex social and ethical views on the subject
without necessarily having complete or even
accurate information, and are capable of conducting sophisticated discussions on genetics.
9
Most people have some conversational familiarity with genetic terminology, often because of
exposure to stories in the media.
10
Public
understanding is not necessarily linked to technical knowledge and increased knowledge does
not translate automatically into acceptance of
new genetic technologies. Calnan et al.
11
has
shown that most people are positive about science and technology, but with a substantial
minority consistently showing scepticism about
some of its benefits. Others argue that some
applications of genetics are perceived to be
unacceptable because they violate a society's
religious or moral standards, or are rejected as
not useful to society; other applications might be
useful but they are too risky, while others may
be judged moral, useful and safe but remain
unwanted because those controlling the technology are not to be trusted.
12
Research in this area has been mixed and ranges
from public opinion polls to the use of deliberative techniques, such as focus groups or consensus
conferences, in an attempt to untangle what the
general public thinks about the new genetics and
how it impacts on their social world. Very little of
this research however, is fed directly into the
policy-making process and there is restricted discourse between ordinary members of the public
and policy makers. Furthermore, most of this
research has been conducted with adults.
Public consultation on genetics and reproductive
decision making
In July 2004 the Human Genetics Commission
(HGC) launched a public consultation -
Choosing the Future: Genetics and Reproductive Decision Making - which sought the views
of the British public on these issues.
13
The HGC
argued that the term designer babies could be
used to refer to a range of reproductive techniques including the use of sex selection techniques to prevent the birth of children with
X-linked diseases; preimplantation genetic
diagnosis to select for embryos free from genetic
disorders; selection techniques for egg, sperm or
embryo donors with particular characteristics,
and the enhancement of features such as intelligence, sporting ability or attractiveness. They
set a number of questions about specific issues
pertaining to genetics and reproductive decision
making as well as asking people to outline their
hopes and fears for the future.
Given that today's young people will be the
first generation to make use of new reproductive
technologies we felt it was important that their
voices be heard in this debate and should inform
the HGC consultation. Preliminary research at
Techniquest, the science discovery centre in
Cardiff, using focus groups across Wales demonstrated that within the area of genetics and
reproductive decision making the subject of
designer babies is one which young people are
familiar with, can relate to, and consider a key
issue in the genetics and reproductive decisionmaking debate.
Young people are more likely to engage with an
issue the more immediate it is.
14-16
Curtis et al.
17
argues that methods for effective consultation
with young people on health issues are improving.
Every approach must be flexible and age-appropriate so we decided to gather the views of young
people aged 16-19 in Wales in a Citizens Jury on
the question Designer babies: what choices
should we be able to make?. The aim of this paper
was to describe the Young People's Citizens Jury
on Designer Babies in Wales, and to offer some
reflections on what they considered to be acceptable public policy in this area.
Method
Citizens Juries are an important way of facilitating informed debate into the policy-making
process. Modelled on the juries used in legal
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
208trials, a Citizens Jury typically meets for a period of 3-5 days during which jurors are presented with an issue, have a chance to examine
evidence, interrogate expert witnesses, debate all
aspects of the topic and present a decision on the
policy question posed. A Citizens Jury differs
from a legal trial in that much more interaction
amongst jurors, and particularly between jurors
and witnesses, takes place in a Citizens Jury.
Jurors engage in group work and discussions
and have considerable opportunity to crossexamine witnesses after they have presented
their evidence. The Jury then deliberates over
the evidence together and a number of recommendations are agreed with the help of a trained
moderator. A Citizens Jury is based on the
premise that ordinary people given enough
opportunity, time, support and resources are
eminently capable of arriving at decisions about
complex policy matters.
18
Citizens Juries have
been used in the UK to tackle a variety of subjects, including inter alia, housing, insurance,
hospital closure and genetically modified foods.
They were used in Wales for the first time in
1997 to explore the public's attitudes to genetic
testing for common disorders in the National
Health Service (NHS).
5,19
Recruitment
Trying to get 16 young people to form a Citizens Jury involved a variety of innovative
methodological approaches. We were keen to
ensure the Jury was diverse so we wanted jurors
to broadly represent the Welsh population aged
16-19 which meant that two-thirds were to be in
full-time education. Recruiting young people
still at school was relatively easy; attracting
those no longer in full-time education required a
variety of different approaches, often working
with young people's groups and organizations as
intermediaries, to ensure the quota of one-third
required. In the event, four of the 14 jurors were
not in full-time education.
Flyers about the project were given out to students visiting Techniquest as part of their A-level
courses, and were posted to all schools on Techniquest's database, employers in the Cardiff area,
colleagues in local universities, nurseries and
after-school clubs. It was a challenge to get
marginalized young people involved in an extended deliberative process, so key workers in
organizations such as Sure Start, Barnardos and
Tros Gynol (for children in care) were also targeted. Wales has a relatively well-developed
infrastructure for young people's participation in
public policy making. Wales was the first of the
UK countries to establish a Children's Commissioner, reflecting many years of work by Children
in Wales (representatives from which moderated
the Jury) and others to ensure that the UN Declaration of the Rights of the Child shapes the
policy framework for children and young people
in Wales. This national structure complements a
well-developed local infrastructure, with each
local authority in Wales sponsoring its own children's and young people's forum drawn from
School Councils and other young people's bodies,
and ultimately linked to the Wales Youth Parliament and Funky Dragon, a Welsh Assemblysponsored Internet forum for young people. All
of these organizations were also given information about the Jury and asked to advertise a series
of pre-Jury meetings.
Participants
Two pre-Jury meetings were held in Techniquest
on Saturday mornings in July 2004. The purpose
of these meetings was to explain to the young
people who had expressed an interest in being a
juror what the process of a Citizens Jury
involved and to elicit from them a firm commitment that they wanted to be considered as a
juror. At this meeting they were told the project
would take up 3
1
2
days of their time and that
they would be paid a daily rate of £50 per day
plus travel expenses. A total of 37 young people
registered after these pre-meetings and from this
list a stratified random sample of 16 people was
chosen to give broadly equal numbers of males
and females in the Jury, of which one-third were
outside the formal school system. Two people
(both male) dropped out the morning the Jury
commenced. A demographic breakdown of the
Jury (n ¼ 14) is given in Table 1.
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
209Preparation
The establishment of a steering group is often
the key to the success and legitimacy of the
project.
20
This Citizens Jury was formally
guided by a steering committee, composed of
academics, clinicians, policy makers, patient
representatives and young people, who met three
times between January and August 2004. We
were concerned about providing unbiased
information to the Jury and consulted the
steering committee about the choice of witnesses. We were advised on types of witness for each
session and offered suitable names; in addition,
the young people at the pre-meetings had
requested that some witness evidence be given by
people with direct personal experience of genetics and reproductive decision making. A range
of young people was also consulted at every
stage of the process. For example, their opinions
on the terminology and topics were sought in
focus groups; they were represented at steering
committee meetings; others reviewed some of the
written and visual evidence that was presented to
the Jury, and were asked for their opinions
about everything from the venue, to the type of
food that should be served.
Process
The Citizens Jury ran for 3
1
2
days in September
2004 and was moderated by two trained facilitators from Children in Wales with experience in
engaging young people. The first half day
focused on establishing trust, laying down
ground rules, developing a common sense of
purpose, ensuring everyone understood the
process and encouraging the young people to
develop some ownership of the Jury. One session
was devoted entirely to the science of genetics
and reproductive technologies; this was requested in the planning discussions with young
people. Information was provided in a variety of
different ways, such as video clips, newspaper
articles and games, in order to make it as
interesting and as interactive as possible.
The Citizens Jury was divided into three stages, relating to three of the main potential uses
of the technology: (1) to prevent inherited diseases, (2) to save the life of an existing child with
a serious medical condition (saviour siblings),
and (3) for non-medical reasons such as sex
selection. The Jury listened to 12 expert witnesses each speaking for approximately 15 min.
Witnesses included clinicians, academics,
researchers, policy makers and advisors, as well
as individuals with direct personal experience of
the issues as patients/service users and their
families. Witness presentations moved between
those that focused on general principles and
were intended to be adversarial to the case
studies delivered by ordinary people presenting
personal testimonies on how the issues had
affected them and their families. Each witness
was briefed in advance with guidelines about
talking to young people (produced by the moderators) and asked to submit their argument in
written form in a couple of paragraphs so that
jurors could assimilate the main arguments in
advance of their session. Witness presentations
Table 1 Demographic breakdown of Jury
Gender
Female 8
Male 6
Ages
16 3
17 6
18 3
19 2
In full-time education
Yes 10
No 4
Welsh speaking
Yes 2
No 12
Were parents
Yes 2
No 12
Registered disabled
Yes 2
No 12
Religion
None 7
Christian (unspecified) 3
Roman Catholic 2
Hindu 1
Muslim 1
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
210were also open to members of the public to
ensure the process was transparent, and there
were a number of observers every day. The
jurors questioned the witnesses directly, immediately following their presentation. Approximately a third of the total time was devoted to
discussions and other interaction amongst the
jurors themselves.
Every witness presentation was tape-recorded
and videoed, as were the discussions between
witnesses and jurors and between jurors themselves. Other methods used to gather data
included hand-held video cameras used by
jurors; juror diaries; pre- and post-Jury questionnaires and individual interviews with jurors
1 month after the event. Data analysis involved
compiling summary statistics and using thematic
categories for the qualitative data.
Results
Participants discussed general concerns in relation to the three main applications of designer
baby technology, compiled a verdict of their
main recommendations, and outlined many of
their hopes and fears for the future.
Inherited conditions
This was the least controversial of the three
applications. A majority of the Jury believed
that potential parents should be able to choose
to make use of assisted reproductive techniques
to prevent inherited conditions from being
passed on and to prevent serious suffering. The
Jury also supported the idea that at least one
attempt should be available free-of-charge to all
on the NHS, just like any other health service in
the UK. The Jury was almost evenly divided on
whether permission should depend on the
severity of the condition. For some, it was
important to prevent parents from designing
babies for frivolous reasons; for others the
judgement of the parents concerned was the
determining factor. One girl claimed No-one
should be allowed to consciously pass on a
genetic condition to the next generation if the
condition can be stopped with a young man
arguing the opposite No-one in the UK should
be allowed to scan and remove illness as illness is
an important part of society… if we remove illness where do we end, removing everything we
believe to be undesirable. A minority of the Jury
(n ¼ 2) believed that such technologies were an
unacceptable interference with human life,
regardless of the severity of the genetic disease.
It was felt that these techniques would inevitably
undermine the uniqueness of each individual,
and encourage the idea that some people are
inherently better than others.
Saviour siblings
A majority of the Jury also supported the principle of designing babies for the purpose of
curing existing children with serious medical
conditions - saviour siblings. It was felt that
parents were unlikely to discriminate in any
adverse way between their children on the basis
that they were or were not designed for a particular purpose:
It is the type of parent you are, if you are going to
design a baby and you are going to go to that
trouble to save the child then you will love that
child as much.
Again the majority felt that given this is
essentially a health service, it should be available
on the NHS. The minority who opposed this
particular application of designer babies perceived that designing a baby for the benefit of
another undermines the dignity of the one who
has been designed - …it should be loved … not
just for its parts.
Sex selection
This was the most controversial of the possible
applications. The majority of the Jury was
opposed to designing babies for a non-medical
reason such as selecting the sex of a future child
(10/14, with 3 Don't Know). Whilst the relief of
suffering - either of the designed baby or a sibling - may be sufficient justification for interfering with natural processes, to do this for other
reasons (such as family balancing) is to imply
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
211that the designed child is a possession of the
parent. Acceptance of designer baby technology
in this area therefore appeared to be contingent
upon perceived utility. Only one person actively
supported sex selection and she argued:
As a parent I have had two caesarean births, and I
have had two girls. I would love to have a little boy
to finish my family … It should be allowed definitely.
The verdict
The Jury's verdict was compiled on the third full
day by using a series of votes to reflect discussions on the main topics (see Table 2).*
Regulation
There was much discussion on how regulatory
principles should be applied in this area. All the
jurors supported the existence of some form of
regulatory regime in the UK. They felt that the
regulator should set and enforce quality of care
standards for each clinic, and that each application to design a baby should be considered
individually by the regulator (by applying
standard rules) to allow for exceptional cases.
Jurors were particularly concerned that all
applicants should receive a fair and swift hearing
from the regulator, and that their individual
circumstances should be fully explored before a
decision is made. Jurors were concerned with
welfare of the child arguments and claimed that
regulation must endeavour to ensure that parents are unlikely to abuse or in any way discriminate against the designed child. Most
believed the age of the parents was not a relevant
factor on its own for decision making. Finally,
there was broad agreement that it would be
impractical to prevent potential parents from
travelling abroad to avail of fertility tourism in
order to avoid UK regulation.
Two other key issues emerged from the group
discussion. First of all, the majority of the Jury
felt that policy-making bodies - and in particular the Human Fertilisation and Embryology
Authority (HFEA) - should be more representative of people who will be affected most by
policy developed in this area. Thus, they argued
that the HFEA should include some members
within their age range, i.e. under 20. Secondly, at
the end of the process the Jury decided that the
term designer babies was not a useful description for the processes that were currently being
Table 2 The verdict
Agree Disagree
Don't
know
1. People should be allowed to design babies to prevent genetic conditions
from being passed on
12 2 0
2. Permission for this should depend on the severity of the condition 7 6 1
3. The service should be available on the NHS 10 2 2
4. People should be able to design babies to save their siblings 13 1 0
5. Permission for this should depend on the severity of the condition 10 3 1
6. The service should be available on the NHS 9 3 2
7. People should not be allowed to design babies for the sole purpose of sex
selection (with no health benefit)
10 1 3
8. Permission to design babies should depend on parents suitability 11 2 1
9. Permission to design babies should not depend on the parents age 10 4 0
10. People should be not be prevented from going abroad to avoid UK
regulation on designer babies
11 3 0
11. The HFEA should have some members under the age of 20 10 2 2
12. The term designer babies is not a useful phrase 12 1 1
*Video clips of witness presentations and a full copy of the
Jury's Verdict can be downloaded from http://www.
wgp.cf.ac.uk/CitizensJury.htm
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
212utilized, as it creates a false impression about
what is actually happening. The majority felt
that these processes were much better described
as embryo selection.
Main concerns
Some of the hopes and fears as summarized by
the jurors are listed in Table 3. The following
excerpt gives a flavour of how some of the discussions between participants were conducted
and illustrates some of the wider social and
ethical issues that were considered when debating different aspects of embryo selection:
Male2: …and not just use you … I think Saviour
Siblings are great as long as you don't do that,
what you said there, give it away. That is just like
abusing it.
M4: If you don't want a baby you can help, you
look after the best interests of that baby by putting
it up for adoption.
Female1: Then the mother may lose the sick child
and gives the other one up for adoption and is now
left with…
F2: I think it should be allowed … I think if they
have the disease to have another child.
M2: I can understand giving the baby up for
adoption if you didn't want it in the first place, but
you did want the child because you paid to have it.
M5: A baby is to love, not just to have stems [stem
cells] out of.
M2: We have seen the mother having the baby,
using the stem cells and keeping those for another
baby
F2: People should have the choice.
F3: It is the type of parent you are, if you are going
to design a baby and you are going to go to that
trouble to save the child then you will love that
child as much.
M2: Do you know what annoys me the most, if it
was someone like Tony Blair, and he had a disabled child and he needed to do something about
it, he would get away with it, he could do it and I
think it is unfair. Everybody has the right, no
matter what.
F1: You are not allowed to do that. You are not
allowed to bring a child into the world and then
kill it.
M4: You are not going to be able to do that.
Table 3 Jurors hopes and fears
Hopes
In an ideal future I hope that designer baby technology
will allow people to:
Fears
If things go wrong the following might happen:
Be able to have children, if they so wished People would design babies for selfish reasons, i.e. not to
prevent illness or suffering
Make informed reproductive choices, free from all
outside pressure
Eugenics might come to dominate policy
Have equal rights and opportunities in life, regardless
of personal impairment
Saviour siblings who failed to save might be rejected
Avoid the suffering of children with inherited conditions Accidental damage might be caused to designed babies
Live longer, healthier lives There could be future imbalance between the sexes
Stay together as families for longer if the tensions
sometimes caused by serious inherited conditions
could be avoided
An obsession with the quest for perfection would arise
Have advance knowledge of their unborn child's health,
and be prepared
There would be increased social pressures to design
Have access to designer baby technology where
appropriate, regardless of cost or where they live
There could be prejudice and discrimination against
non-designed babies
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
213The impact of the process
It is not possible in the UK to carry out research
on how the evidence (or the rest of the process)
impacts on the views of jurors engaged in
criminal or other legal proceedings. Fortunately,
this restriction does not apply to Citizens Juries.
The detailed analysis of the transcripts and other
material chronicles the various arguments
advanced by the jurors in their discussions, and
records their verdicts on the various witnesses.
There are many examples of jurors changing
their minds on specific issues, and sometimes of
changing them back again. Taking all the possible applications of designer baby technology
together, at the end of the Jury, most jurors (11
of 14) strongly agreed or tended to agree that
designer baby technology would be useful for
society; but also that it would be risky (12 of 14).
The perceived risk related almost entirely to
misuse of the technology rather than to any
inherent clinical dangers, for example creating
babies for frivolous reasons, or systematic
attempts to impose certain options on would-be
parents.
Jurors were more evenly divided on whether
the use of such technology was morally
acceptable (five agreed, six disagreed), and
should be encouraged (seven agreed, four did
not). When asked to respond to the statement
I would seriously consider designing my own
babies in the future, six agreed and seven
disagreed. In general, the process seems to
have made jurors more optimistic about the
future use of designer baby technology. At the
end of the preparatory half day, and again at
the end of the Jury, jurors were asked to
respond to the question: Are you generally
optimistic or pessimistic about the future use
of designer baby technology?. The results are
shown in Table 4.
On being a juror
Jurors were also invited to keep diaries as the
Jury progressed. These are some of the quotes
from those diaries illustrating what participants
felt about the process:
I was nervous at first, but once involved within the
group, I felt a part of a team
It's been a rollercoaster of a ride these past few
days, but very interesting
It was good to talk properly as a whole about every
topic discussed throughout. There are so many
different points of view and it is good that we are
not all the same
My opinion has totally changed both ways from
neutral. The witnesses and knowledge I have
acquired has enabled me to make my final decision
At first I was concerned that designer babies would
take over and that it would get out of hand,
however after these 3 days I've noticed that
because the issues themselves are so sensitive and
in the limelight, human instinct would never take
us that far
Dissemination
One week after the Jury concluded their deliberations a celebration evening was held for
jurors, their families, the press and other invited
guests at which their recommendations were
discussed and people were given the opportunity
to ask jurors questions both about the process
and how they arrived at their conclusions. In
November 2004 some jurors then presented their
verdict at the Welsh Assembly Government to
the Health and Social Affairs Committee. In
December 2004 some jurors also presented to
Table 4 Jurors views on the future use of designer baby
technology
Start
of Jury
End
of Jury
Very optimistic
1 1 1
2 0 5
3 3 2
4 7 3
5 1 0
6 0 0
Very pessimistic
7 1 1
Don't know/no response 1 2
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
214the Genetics and Reproductive Decision Making
sub-group of the HGC in London, and in February 2005 to the HFEA.
There was extensive regional and local coverage of the project on TV, radio and in the
newspapers, and considerable interest in the
methodology from public organizations struggling with their responsibility to engage young
people in their decision-making processes.
Discussion
A Citizens Jury is a method which can engage
young people in a meaningful way. Our participants had valuable and interesting things to say
about designer babies and they demonstrated
that they could move beyond their individual
opinions and make recommendations that they
felt were best for society as a whole.
21
They used
everyday experience to think about genetics and
reproductive decision making, and the possibility of harm was often rebutted with positive
personal experiences. On many issues these
young people were able to reach agreement
about fundamental values as a result of debate
and discussion, although in many cases, and as
Table 2 suggests, they also reached different
conclusions about the practical implications to
be drawn from those values, and on their relative
weighting.
As a research project, this Citizens Jury has
yielded fascinating data. The values, priorities
and epistemological premises of the jurors were
thrown into sharp contrast by the many emotional and intellectual challenges of the topic,
and the intensity of the process. Considering
some of the challenges that had to be overcome;
for example, arranging childcare, organizing lifts
to Cardiff, and overcoming disabilities, all participants showed huge commitment to the process. In fact, at the end of the Jury everyone said
they would have participated regardless of the
money they received.
There is much literature about the extent to
which citizens are competent to question the
knowledge claims of specialists in complex
decision-making processes.
22
Although we did
not rigorously test knowledge at the end of this
project, none of the jurors felt that they had
insufficient knowledge to contribute to discussions; the rationale for the introductory sessions
explaining genetics and reproductive technologies was to allow jurors to concentrate on the
social and ethical issues. Nor was there any
evidence that these young people experience the
so-called authority effect - the inevitable
deferral to experts - at any time.
23
This had been
a concern before the Jury took place, and
formed a key element of the briefs given to the
moderators and the witnesses. That the problem
was largely avoided is perhaps due in part to
careful preparation, both of the jurors themselves with the moderators re-iterating
throughout that it was the responsibility of the
Jury to make its own decisions, and in relation
to planning the evidence as most viewpoints
were contested by opposing witnesses. It may
also have had much to do with the essential
independence of mind of the particular jurors
involved, many of whom were more inclined to
dispute arguments rather than accept them
passively.
New genetic citizens
24
should not only be
informed but also have the right and the duty to
be active in decision making about the use of
genetic technologies and genetic information.
11
Genetics has recently received a big policy push
in the UK.
25
Genetics and reproductive decision
making are difficult subjects, combining cuttingedge science and technology with complex ethical and legal issues, making it an area where a
substantial element of reflection and interactivity is required for robust lay views to
emerge.
26
It is also an area in which the views of
young people - themselves on the threshold of
making reproductive decisions - are particularly
relevant, representing as they do the generation
which will be first to access significant new
reproductive technologies and relevant genetic
information.
Citizen deliberation is a prominent theme in
health policy literature.
27
The usefulness of a
Citizens Jury is that it emphasizes citizens
rational deliberation rather than gut instinct or
the immediate preferences of a consumer
28
- the
Jury reaches judgements rather than registering
Young people's Citizens Jury on designer babies, R Iredale et al.
2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd Health Expectations, 9, pp.207-217
215attitudes. Kashefi and Mort
20
argue that the
major weakness of the Citizens Jury model is
that it simply extracts the public view without
any built-in mechanisms for follow-up, scrutiny
or accountability. Another limitation is the cost
involved - this Citizens Jury cost £25 000
(excluding staff time). Different versions of the
Citizens Jury are evolving.
29,30
In some versions
the Jury's verdict is presented to sponsors or
commissioners for consideration, who may be
contracted to respond to the Jury's recommendations within a set period. This Citizens Jury
fell victim to this criticism as there was no
immediate decision to be made and no commissioning body to report to; however it did
provide a useful input into the deliberations of
key policy-making bodies (in the case of the
Human Genetics Commission, feeding into a
specific consultation) and the impact on jurors
themselves was immense. The views of these
young people were an important addition to
what is usually a debate amongst experts and
committed lobbying groups that privileges those
with scientific and linguistic capabilities.
31,32
All
of us with an interest in genetics and reproductive decision making need to ensure we listen to
their voices.
Acknowledgements
Thanks to all the young people who participated
in every stage of this project. They are too
numerous to mention by name but every contribution was gratefully received. Thanks to the
steering group who regularly gave of their time to
discuss matters of process or content. Particular
thanks go to the two moderators from Children in
Wales - Sean O'Neill and Mike Lewis - and to
staff at Techniquest, University of Glamorgan
and the Wales Gene Park for assistance with
administrative tasks. This project was funded by
the Wellcome Trust (ref: 074657/Z/04/Z).
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