Anita Shaw and colleagues found out with a citizens’ jury

How far should we venture with ‘designer’ baby technology?  We ran a citizens’ jury for 16-19 year olds, and found out what those who will be directly affected by new policies - today’s teenagers - actually think about the issues.

The publication of the House of Commons’ Science and Technology Committee’s report Human Reproductive Technologies and the Law has put the question in the public arena. The report recommends that parents should be able to choose the sex of their child. The Human Fertilisation and Embryology Authority (HFEA) has also decided to change its policy on the use of pre-implantation tissue typing.

We ran our citizens’ jury in September 2004, in response to the Human Genetics Commission’s (HGC) consultation document, Genetics and reproductive decision making.

A citizens’ jury is analogous to a legal jury in that expert witnesses present evidence for and against a question, but are then questioned by the jury.  The jury ran for three and a half days, which included a half day team-building with the moderators (an experienced team from Children in Wales) to lay the ground rules.

Aims

Our aims were to:

• find out what mattered most to 16-19 year olds in this area
• facilitate discussion and debate between jurors and witnesses with experience in this field
• support jurors in the presentation of their verdict to policy-makers.

Our jury’s question was ‘Designer babies:  what choices should we be able to make?’ We chose it after surveying post-16 biology students in north and south Wales to find out what issues were most relevant to them in the area of genetics and reproductive technology.

Four sub-questions were identified:

• should we be allowed to ‘design’ babies for medical reasons?
• should we be allowed to ‘design’ babies for non-medical reasons (such as sex selection)?
• should we be allowed to ‘design’ babies to save a sibling?
• what regulations, if any, should govern these areas?

The jury was representative of the 16-19 year olds in south-east Wales. Through contacting over 300 local employers, youth forums, local authority bodies and community groups, we targeted interested people and invited them to an introductory session, at which we described the project and asked  potential jurors for input into the process.  One of the important ideas that emerged was that they wanted to hear from ordinary people with direct experience of some of the issues to be discussed.

Outcome

The jury agreed overwhelmingly with the following statements:

• People should be allowed to ‘design babies’ to prevent genetic conditions from being passed on
• People should be able to ‘design babies’ to save their siblings
• People should not be allowed to design babies for the sole purpose of sex selection
• The Human Fertilisation and Embryology Authority should have some members under the age of 20
• The term ‘designer babies’ is not a useful phrase.

A majority of the jurors believed that the ability to design babies will increasingly offer the opportunity to prevent serious inherited conditions being passed on, and that it is acceptable to design babies to cure existing children with serious medical conditions.  The majority opposed designing babies for no medical reason; while the relief of suffering may be sufficient justification for interfering with natural processes, they felt that to do this for other reasons is to imply that the designed child is a possession of the parent.  The majority believed that the process of creating designer babies was much better described as the ‘selection’ of embryos with (or without) particular features.

The jurors presented their verdict to the HFEA, the HGC and the Welsh Assembly Government.

We are currently working with teachers to develop  resources for A level biology, RE and general studies to support the  teaching of social and ethical issues of contemporary science.

A citizens’ jury is an effective model for engaging young people in current issues in science and this project demonstrates that they have valuable and interesting things to say about genetics and reproductive decision making.  It provides a forum for the discussion of complex ideas with experts and, in this project, with those with direct personal experience of the issues.  Further, it gives participants increased confidence in discussing contemporary science, and it serves as a framework to present those ideas to policy makers.

We recommend that policy-makers specifically canvass young people’s concerns when discussing matters of science and technology policy in the future, particularly those which will directly affect this section of the public.

Details of the voting and the verdict are available here. If you would like a hard copy of the verdict, please contact Anita Shaw.

Dr Anita Shaw is Education Director at Techniquest, Cardiff.
Dr Rachel Iredale and Dr Marcus Longley are at the University of Glamorgan. Christian Thomas and Angela Burgess are at Wales Gene Park