Introduction

The Freedom of Information (FOI) Act (the Act) asserts the right of individuals to obtain access to official information to the greatest extent possible consistent with the public interest and the need to protect legitimate confidential information.

It gives a general right of access to all types of recorded information held by public authorities, sets out exemptions from that right (which are outlined in the 'Applications Under the Freedom of Information Act' section) and places a number of obligations on public authorities. A 'public authority' is defined in the Act, and includes but is not restricted to central and local government, non-departmental public bodies, the police, the health service and schools, colleges and universities. Any person who makes a request to a public authority for information must be informed whether the public authority holds that information and, subject to exemptions, supplied with that information.

Individuals already have the right of access to information about themselves under the Data Protection Act 1998. As far as public authorities are concerned, the Freedom of Information Act will extend this right to allow public access to all types of information held.

Every public authority will be required to adopt and maintain a publication scheme setting out the classes of information it holds, the manner in which it intends to publish the information, and whether a charge will be made for the information. The purpose of a scheme is to ensure a significant amount of information is available, without the need for a specific request. Schemes are intended to encourage organisations to publish more information pro-actively and to develop a greater culture of openness.

The United Kingdom Xenotransplantation Interim Regulatory Authority (UKXIRA) currently makes information routinely available to the public in relation to its functions and activities. Such information will continue to be available without the need to use the FOI Act. This guide highlights, in relation to each of our activities, where information of this nature is available. This guide also provides information on our activities to assist you in accessing information both outside and under the FOI Act.

The Role of UKXIRA

Who we are

The Government is assisted in the consideration of issues about xenotransplantation by the United Kingdom Xenotransplantation Interim Regulatory Authority (UKXIRA). The Authority was established in May 1997 following the Government's acceptance of the recommendations made in "Animal Tissue into Human", the report of the Advisory Group on the Ethics of Xenotransplantation (The Kennedy Report).

The UKXIRA advises the Government on the acceptability of specific applications to undertake xenotransplantation procedures and also acts as a focal point for xenotransplantation issues. Public opinion clearly has an important role to play in the development of xenotransplantation, and the UKXIRA is interested to hear all views, both about its work and about xenotransplantation generally.

What we do

There is a world shortage of human organs and tissue for transplantation. Improved systems for organ retrieval and emerging technical advances such as the development of artificial organs and tissue engineering may help to increase the supply of organs and tissue available.

Work to increase public awareness of the donor programme, together with initiatives to promote healthier lifestyles, is also under way. However, many conditions that lead to the need for transplants cannot be prevented simply through leading a healthier lifestyle. It remains the case that human organ and tissue transplantation alone is unlikely ever to be sufficient to meet demand.

Xenotransplantation - the transplantation of animal tissue into humans - is a potential solution to this shortage. Scientific developments, including the genetic modification of animals (most notably in pigs) may mean that the problem of rejection of tissue transplanted between species can be overcome. This raises the possibility of increasing the supply of organs and tissue to meet medical demand.

However, it also raises the possibility of transmission of infections from animals to patients and the wider population. Clearly, the wellbeing of the individuals concerned, and the safety of the public in general, must be foremost in the consideration of any proposal to undertake a xenotransplantation procedure. The Government's position remains that any clinical trial in xenotransplantation involving humans will be allowed to take place when only they are fully satisfied that the evidence put forward is sufficient to justify the particular xenotransplantation procedure proposed.

The UKXIRA's role is to:

Provide a focal point for xenotransplantation activity in the UK;

Provide a means of regulating xenotransplantation and, in particular, to provide a process through which applications to undertake xenotransplantation in humans can be considered;

Consider the underlying evidence about xenotransplantation developments and to consider whether clinical trials can be justified.

The UKXIRA Secretariat is provided by officials from the Department of Health.

Information available elsewhere

Information already available to the public may be accessed without using the FOI Act. A great deal of information is already published on our website.

Applications under the FOI Act 2000

Under the FOI Act, anyone is entitled to request information not otherwise publicly available. Please note that the FOI Act does not cover requests for a patient's personal data. Those requests will continue to be subject to the provisions of the Data Protection Act. Two of the main features of the FOI Act are:

a general right of access to information held by the UKXIRA, subject to certain conditions and exemptions.

In cases where information is exempted from disclosure, except where an absolute exemption applies, there is a duty on the UKXIRA to:

(i) Inform the applicant whether they hold the information; and
(ii) Communicate that information to the applicant;
unless the public interest in maintaining the exemption in question outweighs the public interest in disclosure.

We intend to make the information contained within the Publication Scheme available through our website, and will develop new content for the Publication Scheme area of our website and should you have difficulty in finding the information you require, please write to us or telephone us. Our contact details are shown below.

The UKXIRA is obliged to respond to requests within 20 working days of receipt of the request. Requests for information under the Act should be addressed to the UKXIRA Secretariat who is responsible for the Publication Scheme.

Copyright

This Publication Scheme and documents provided by the UKXIRA under the Freedom of Information Act 2000 will be subject to Crown Copyright.

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copyright: © | last updated 12 December 2006