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Cambridge Institute for Medical Research Department of Medical Genetics Wellcome Trust/ MRC Building Hills Road Cambridge CB2 0XY Tel +44 1223 762609 Fax +44 1223 331206 Email [email protected] http://goldstudy.cimr.cam.ac.uk/ Dr F L Raymond MA DPhil FRCP Reader in Neurogenetics and Honorary Consultant in Medical Genetics CONSENT FORM Whole Genome Sequencing Genetics of Learning Disability (GOLD) Study Chief investigator: Dr Lucy Raymond Please tick boxes 1. I confirm that I have read and understand the information sheet dated July 2010 (GOLD.07/10) for the above study and have had the opportunity to ask questions. 2. I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason, without my medical care or legal rights being affected. 3. I agree to take part in the above study. 4. I understand that sections of any of my/my child’s medical notes may be looked at by responsible individuals from the GOLD Study, University of Cambridge or from regulatory authorities where it is relevant to my child taking part in research. I give permission for these individuals to have access to my records. 5. I understand that a blood and/or saliva sample will be taken and used to analyse the DNA extracted from it. 6. I consent to a further blood test and/or saliva sample to be taken if needed and the establishing of a lymphoblastoid cell line from my blood sample. 7. I understand that the research team will contact me if they find a genetic variation from all of the research that they have done, which they believe may explain my child’s learning disability in order to explain the finding and to discuss possible further studies. 8. The DNA sequencing techniques used in this research will also reveal large amounts of information about other, unrelated, genetic variations which may point to my child’s risk of other diseases in the long term. However, I understand that the techniques used in this research are not of the same high standard as those used in the clinic. Therefore, the research results are not accurate enough to be used for diagnostic testing without lots of extra work and knowledge. 9. I understand that I will NOT be told about any genetic variations which are identified as a by-product of this research which are not the cause of my child’s learning disability. 10 I agree that research on the samples provided by my child to identify their cause of disease can continue in the unlikely event of my child’s death. Version: GOLD 07/10 – July 2010 1 11. I understand that my child’s identity will remain confidential to the doctors and nurses in the study team. No genetic data will be released with patient identification attached. Other people will only have access to genetic and personal information that could identify me if I give further specific consent AND this is approved by a medical research ethics committee. 12. I agree that the genetic information produced by studying my child’s DNA may be placed in an electronic archive with no connection to their name or other personal identifier. I understand that this archive will only be accessible to appropriate doctors and researchers who have been approved by a committee set up to ensure the results are only used to advance scientific and medical understanding. However, I understand that researchers could identify me from the deposited information if a second DNA sample was tested from me by another person. However, all scientists who access this information must sign a form agreeing not to try and identify individuals. If they did try to identify someone, they would be subject to disciplinary proceedings. All researchers involved in this project are also bound by professional obligations, data protection law and the legal obligation of confidentiality. 13. I understand that neither I, nor my child will benefit financially if this research leads to the development of a new treatment or medical test. Name of child (BLOCK CAPITALS) Signature Date Address Name of parent/guardian (BLOCK CAPITALS) Signature Date Name of researcher Signature Date 1 copy for patient; 1 copy for researcher; 1 copy to be kept in hospital notes Version: GOLD 07/10 – July 2010 2