Cytogenetic Assessment of British Nuclear Test Veterans and their Offspring

This research was reviewed and approved by London-Chelsea Research Ethics Committee. It has also been reviewed and approved by an academic oversight panel independent of the research team, as well as by the Confidentiality Advisory Group and NHS Digital. The review and approval processes centre upon protecting the rights, safety, dignity and wellbeing of research participants.

UK veterans are identified using military records and they and their wives/partners are invited to take part through receiving a letter from their GP practice. The Confidential Advisory Group has approved the linkage of NHS number and date of birth to GP practice details by NHS Digital, who would then forward this information to the research team at the London School of Hygiene & Tropical Medicine in order to invite potentially eligible veteran couples to participate in this study via their GP practice. If the veteran couple show an interest in the study by returning a reply slip to the study team, they will receive a phone call to discuss the study and their eligibility. Participants will then be asked to give consent and to pass on an invitation letter and further information about the study to a child they have had together. The study team will then arrange a convenient time to complete a brief telephone interview with veterans to discuss the details of their service, exposures to various things and a brief outline of smoking and drinking habits. All participants (veteran, wife/partner and child) will then go to their GP practice to have a small blood sample collected through placing a needle in a vein in their arm. The blood sample would be sent to Brunel University London for analysis. With each participant’s explicit consent, the study team would also like to monitor all written and electronic medical records to assess their lifelong health. This information would be obtained by linking each participant’s NHS number, date of birth, postcode and gender to various medical records, including those held by NHS Digital on cancer registrations and deaths and the Hospital Episodes Statistics database on hospital admissions. Study outputs will only contain aggregate and anonymised level data. No individual data will be identifiable in the published results. All data would be handled, processed, stored and destroyed in accordance with the Data Protection Act 1998.

Veteran families cannot volunteer for this study as it could bias the results. However, veteran families who do not wish to be invited to participate in this study may contact the study team at the London School of Hygiene & Tropical Medicine on telephone number 020 7927 2722 or email VETS@LSHTM.AC.UK to advise accordingly. The study team will also be available to assist with further information or clarification as required.

Informed written consent will be obtained from potential participants after they have had ample time to consider taking part in the study (a minimum of 24 hours from receipt of written information) and only if the participant replies to the LSHTM study team indicating their willingness to be contacted by telephone to discuss the study. During the screening phone call, the LSHTM study team will review the exclusion criteria with potential participants to verify eligibility. Written informed consent will be obtained from willing participants following an explanation of the aims, methods, anticipated benefits and potential hazards of the study.

Participants are completely free to refuse to enter the study or to withdraw at any time during the study, for any reason. In addition to consenting to participate in the study and allow access to their medical records for the purposes of lifelong follow-up, participants will have the option to consent to sample storage and future use and genetic research. 

All information collected about participants during the course of the research will be kept strictly confidential. This includes the personal information provided by participants at the beginning of the study as well as all information from their medical records.  All electronic records will be stored on a secure computer at the London School of Hygiene and Tropical Medicine. Paper records (including consent form, contact details and any postal correspondence or paper questionnaires collected during the study) will be stored in locked filing cabinets at the study coordination centre at the London School of Hygiene and Tropical Medicine. Participant information will be anonymised using unique study numbers when being processed and analysed in this study. Brunel University London will only have access to this unique study number (not personal participant information) for the purpose of analysing the blood sample that is sent to the laboratory there. The only people who will have access to identifiable data will be members of the London School of Hygiene and Tropical Medicine study team and representatives of NHS Digital for the purpose of recruiting participants to this study and following up their health status and hospital admissions. All will have a duty of confidentiality to those recruited as research participants and all data processing will be done in accordance with the Data Protection Act 1998. Following approval from the Confidential Advisory Group, each participant’s NHS number and date of birth will be linked to their GP practice by NHS Digital, who then forward this information to the research team at the London School of Hygiene & Tropical Medicine in order to invite potential participants to take part in this study via their GP practice. Participant data will be used to analyse results of the study.  It will be retained for up to 20 years and will then be disposed of securely. If a participant agrees to take part and give permission, we will follow up their health status and hospital admissions by supplying their NHS number, date of birth, postcode and gender to NHS Digital for this purpose. If we wanted to use their data for future studies, we would need to gain further permission for this from a Research Ethics Committee. All participants will have the right to check the accuracy of data held about them and correct any errors. Our procedures for handling, processing, storage and destruction of your data are compliant with the Data Protection Act 1998.