Further to the request from the Science and Technology Committee about genetic databases, please find detailed below information relating to the questions raised.

Q1.  What current projects involve collecting genetic information on people in the UK? What other projects are about to start? Are there collections of material (eg tissue samples) that could be used to generate databases of DNA profiles?


  A1.  The CSA obtains DNA samples via blood tests from individuals for use in paternity testing where disputes arise over genetic paternity. The samples are destroyed after a set period of three months and are not, therefore, retained as a database of genetic material. On the subject of other databases, we are aware that fear of the CSA has been cited by police officers as a reason for not giving DNA samples.

Q2.  Why are these genetic databases being assembled? How are these activities funded? What practical considerations will constrain developments? Are there alternative ways of fulfilling the objectives?


  A2.  The CSA samples are collected as part of a voluntary scheme where disputes arise over genetic paternity. In such instances they are a step along the route to the payment of child support maintenance. Where the parties in question do not make use of the voluntary scheme, the CSA can also pursue DNA testing through the courts. Fees from the individuals and via the CSA fund the tests, depending upon the circumstances of the case and the individual concerned.

Q3.  What is the genetic information that is being collected? How is it being stored and protected?


  A3.  The information is collected via blood tests. The CSA employs University Diagnostics Ltd (UDL) to conduct paternity analysis. This involves the collection of blood samples from the parent with care, the alleged non-resident parent and the child for analysis and reporting. Once UDL have conducted their analysis and reported the results to CSA and the parties involved, the blood samples are retained securely at their premises pending the need for a repeat test. All samples are routinely destroyed after three months and all paper records are destroyed after 12 months.

Q4.  How do the organisations involved see their responsibilities regarding privacy; consent; future use; public accountability and intellectual property rights?


  A4.  The CSA has contracted UDL to carry out all paternity testing. All UDL staff are required to sign a confidentiality undertaking and the contract between CSA and UDL requires UDL to maintain customer confidentiality in relation to all customer personal information. As the samples are routinely destroyed there is no information retained on a database that can be used for future analysis. There are specific safeguards when a blood sample is refused on religious grounds and use of photographs ensures that the individuals tested are the correct individuals. Both "parents" and the CSA are notified of the results of the tests. Consent is sought from children over 16. Consent is not sought from younger children at present. We recognise that this may be an issue since the children in question may be of an age to understand the process.

Q5.  How do they see their activities in the area of genetic databases developing in the future? What advances in sequencing, screening and database technology are they anticipating?
Q6.  What lessons should be learnt from genetic database initiatives in other countries?


A5 and A6.  In the future we foresee that our activities will continue to be confined to DNA collection for the determination of paternity. Changes to legislation may lead to alterations in the number of cases since we will be in a position to assume that someone refusing a test is the genetic father. Feasibly this could stimulate more tests on the "well I might as well be sure" basis. Nonetheless we are aware of the many ethical and practical issues that surround the use of DNA samples and the quest for genetic origins—especially in a climate where sharing of governmental information is promoted. We will therefore observe developments with interest and consider our position in the light of future changes. Allied to this we have conducted literature searches upon child support and DNA testing in the international context. This reveals next to no published material specifically on paternity, child support and DNA. We are, however, part funding PhD research into this as part of our commitment to further education.


Doug Smith
Chief Executive

10 October 2000