Evaluation

Given that Citizens' Juries are a relatively new method of consulting with the public in the UK, they are still being evaluated and compared with other more traditional methods. This Citizens' Jury was independently evaluated by a small team of researchers from

R. Iredaie and M. Longley Table 2. Summary of recommendations of the citizens'jury on genetic testing

General Principles

That planning for the future of genetic testing should be much higher on the agendas of policy makers and professionals at all levels within the NHS and government That there should be no general population screening for genetic susceptibility to common diseases: genetic testing should only be offered to families known to be at high risk That the NHS should take the leading role in the provision of genetic testing services That the timing and pace of new developments should be controlled, following expert advice

That ethnic, cultural, and religious considerations should be respected at all stages in the planning and provision of services That the interests of future generations should always be considered when drawing up policies in this area

Ensuring Equity of Access to Genetic Services

That everyone with a family history of genetic disease should have equitable access to high quality genetic testing services at the primary care level

That every patient should have equitable access to specialised genetic services, through a well-understood system of referral from the GP Achieving the Right Balance of Funding

That money be 'earmarked' to ensure adequate funding for genetic testing services for families at high risk, both at the primary care and specialist levels That the 'earmarked' funding be distributed according to need, and that this distribution be regularly reviewed That research into the genetic causes of common disorders should continue

Improving Genetics in Primary Healthcare

That a family history should be taken from every new patient registering with a primary healthcare team in order to identify those at high risk of a genetic condition That good communication between service providers is necessary, perhaps by sharing information in the form of 'best practice' examples

That every primary healthcare team should have equal access to information and advice from specialist genetic services That one member of the primary healthcare team should have lead responsibility for genetics Ensuring Adequate Counselling For All

That a genetic testing service should always include both pre- and post-test counselling

That genetic counselling should always be initiated by the primary healthcare team before referral to a specialist genetic centre That all members of the primary health care team involved in genetic testing receive training in non-directive counselling Maintaining the Regulatory Framework

That no regulation in addition to the recent Code of Practice and Guidance on Human Genetic Testing Services Supplied

Direct to the Public is required at present That developments in genetic testing should be kept under close scrutiny by the Advisory Committee on Genetic Testing, and that the government should not hesitate to introduce legislation immediately if it is required That consideration be given to the establishment of an independent 'Ombudsman' for genetic testing to investigate individual complaints and to advise on acceptable levels of pricing and profits That individuals should remain free to use private genetic testing services offered within current regulation Expanding Public and Professional Knowledge

That the general public and politicians need to have a better understanding of the implications of genetic testing That the media should be provided with balanced and objective information about genetic advances That genetics should have a more prominent part in the National Curriculum, and also in community education That adequate resources be allocated to the appropriate training and up-dating of all NHS staff who will be involved in genetic testing in the future

That basic training in genetics for NHS staff should meet nationally agreed standards. This could perhaps be achieved through a 'National Curriculum' on genetic testing for healthcare professionals at the pre-qualification stage Keeping the Public Involved

That it is vital to stimulate an informed public debate on the healthcare implications of the new genetics in order to maintain public confidence, and therefore that the Human Genetics Advisory Commission pay particular regard to their third term of reference.

the Universities of the West of England and Birmingham, in conjunction with researchers from another department within the University of Glamorgan.

WIHSC will also be evaluating the Citizens' Jury process. One purpose of this Citizens' Jury was to inject into the policy-making process a coherent summary of informed public opinion on the specific question posed. Success in this instance was therefore meas ured by the extent to which the jurors were able to address the issues involved, and then frame relevant recommendations which would command the attention of those responsible for policy making in this area. A second purpose was to contribute to the Institute's broader research programme on public attitudes to the new genetics in healthcare. It is hoped that a fuller analysis of the Citizens' Jury will provide a unique insight into the perspectives of lay people, and the values and priorities which they bring to bear on these issues.

4. CRITICISMS OF CITIZENS' JURIES

Arguments in favour of the jury method in general include that it is a safeguard of liberty, it can be an essential check on injustice and that it is the best means for establishing the truth. Arguments in favour of Citizens' Juries reflect these points, and also emphasise improving reflexivity, fostering notions of active citizenship and providing the public perspective on topical issues. Critics of Citizens' Juries tend to generally emphasise the following: (1) expense, (2) lack of representativeness and (3) that Jurors may lack the ability to understand all the evidence.

The question for the Jury must be one of sufficient importance to justify the costs involved and the significant amount of time input from Jurors. Citizens' Juries typically cost between £16—20,000 and concern is regularly expressed about value for money for an exercise that may have little or no impact on decision making. It has been suggested that the money might be better spent for example, by employing a community worker, providing education or directly improving services. However, if a question of significant magnitude is chosen, where the consequences of particular decisions are great, it can be argued that commitment of such sums actually represent a good investment. The full costs of the Jury have not yet been assessed, but will be calculated once the process is complete. Much of the total cost went directly to the Jurors, who received an allowance of £300 for taking part, and whose travel and other expenses were also met. Other costs included the use of the venue and the salaries of WIHSC staff involved. Additional costs were incurred because of the facilities provided for observers, such as closed circuit television.

A Citizens' Jury, given that it involves 12—16 people, can never be truly 'representative' of the population as a whole, if understood in conventional quantitative terms. For a Citizens' Jury, as with their analogue in the legal process, it can be argued that strict representativeness is less important than the fact that Jurors have no personal or selfish interest in the subject and have an opportunity to deliberate in a considered and unfettered manner. It is important that the Jurors are recruited in a way that is rigorous and independent of any other vested interests involved.

Another common criticism against Citizens' Juries is that Jurors may lack the ability to understand all the evidence presented to them by the witnesses. This may partly be a consequence of the fact that many policy makers (and even scientists) are not themselves entirely convinced of the capacity of the public to understand such a complex subject as genetics, and then to make sensible decisions on it. According to Turney (1996) the lament about the public's inadequate understanding of science is often heard, and some scientific experts argue that the general public are ill-equipped to understand the complex issues that surround biomedicine. Other experts have cautioned explicitly against the inclusion of public opinion in the decision making:

It can be argued that "public opinion" is a shallow concept and that in relation to "esoteric" subjects like genetic engineering where the public is generally not knowledgeable, opinions are formed at the time the questions are asked—converting them almost into "non-opinions", in that they had not been thought about, or held deeply (Lemkow, 1993:10).

The focus group research undertaken by WIHSC demonstrated that genetic testing is an issue that people can grasp reasonably well in a short period of time. Allied with the fact that the Jury question was derived from the focus groups gave confidence from the outset that Jurors would be eminently capable of understanding many of the esoteric issues usually perceived to be the province of experts. Of the 75 or so observers who viewed the Citizens' Jury over the four days, 50 filled out a short questionnaire asking them for their opinions on the proceedings. One question was whether they thought that the topic of genetics was too difficult to be understood by a lay audience. 88% of observers claimed that it was not too difficult, 8% were undecided and only 4% of observers thought the topic was too difficult for the Jury.

Was this article helpful?

0 0

Post a comment