Cancer and Society in the 21st Century
You are being invited to take part in a research study that is exploring what the latest developments in the understanding, prevention and treatment of cancer mean for individuals, their families and health care. We are asking a wide range of people if they might be interested in taking part, whether as a member of the public, someone who has been affected by cancer, someone who is conducting research, or someone who is involved in providing services and support. We are keen to speak to as many people as possible from different walks of life and with different experiences and expertise. This leaflet gives you information about the study, the research team and what taking part would involve. Please take your time to decide whether or not you wish to take part.
What is the study about?
Medical detection and treatment of cancer is improving as we learn more about all of our genes and how they work. Today, scientists are using complex technologies to study complete sets of genes (genomes), and to investigate how groups of genes may contribute to cancer. This is leading to the development of new tests to detect cancer or risk of cancer; there is also the potential for treatments to become tailored to individual patients. People are also becoming more involved in cancer research, for example through clinical trials, donating tissue and providing health information. This has led us to ask whether such developments affect how we, as individuals and a society, think or feel about cancer, its prevention and cure, and our role in cancer research.
Our study will explore what these medical and scientific developments mean for people, including those with experience of cancer as well as those around them. We will interview people with experience of cancer, their families, scientists, healthcare professionals, those involved in cancer charities and support groups, those participating in research studies and the wider public.
Who is doing the research?
The research is based at the Usher Institute, Edinburgh Medical School, The University of Edinburgh and led by Professor Sarah Cunningham-Burley. The researchers are Tineke Broer and Emily Ross. Kay Lindsay is the project administrator. There is a companion project being led by Professor Anne Kerr at the University of Leeds. This study is part of a programme of research called ‘Translations and transformations in patienthood: cancer in the post-genomic era’. It is funded by The Wellcome Trust, an independent global charitable foundation that aims to improve lives and health through research and engagement with society.
What would I be asked to do?
If you decide to participate, you will be asked to take part in an interview with a member of the research team, at a time and place convenient to you. The interview will last about an hour and will be quite informal: we want to hear about your views and experiences. At the beginning of the interview you will have time to ask questions and you’ll be asked to sign a consent form. With your permission, we would like to record the interview so that we can produce an accurate written record of what you say.
Do I have to take part?
It is entirely up to you to decide whether or not to take part. If you think you might be interested, please contact the research team using the details at the end of this leaflet. We will also be happy to answer any questions before you decide. If you decide to take part you can change your mind at any time and withdraw from the study without giving a reason. Just let the research team know that you do not want to take part any more.
What happens if I don’t want to take part?
If you don’t want to take part that’s absolutely fine. Please just let the research team know by phone or email, and once we confirm that we have received your message we will not contact you again. If we don’t hear anything from you after a fortnight we will send you an email reminder or give you a phone-call to see if the study is something you would like to take part in. If you tell us ‘no’ we will not contact you again.
Are there any risks to taking part?
There is no known risk if you take part in this study. You don’t have to answer all of the questions if you don’t want to. Some of the topics under discussion may be emotional, for example if you have a friend or relative who has been affected by cancer. If you feel uncomfortable you are free to stop the interview at any time.
Are there any benefits?
There are no direct benefits to participating in this study, although you will have the opportunity to voice your opinions and describe your experiences. Many people find they enjoy talking about matters that are important to them. We hope that the results of the study will be useful to the health service, to patients and their families and to those conducting medical research.
Who will see my information?
Any information we have about you and everything you say in the interview will be kept confidential. Your name and any other information that you provide in the interviews which might identify you will be removed or changed so that you can’t be recognised. A professional, experienced transcription company will type up what you have said during the interview. This company, as well as our administrative staff, comply with confidentiality requirements. Your name will not be used in any published work from this project, and identifying information, such as the names of family members, will not be used. Your name and contact details will be kept separately from the typed or recorded versions of the interview. Any documents containing personal information about you will be stored in a locked filing cabinet. The audio recording of your interview and the document with what you’ve said will be stored on password-protected computers. After five years the audio recordings will be destroyed and transcripts will be destroyed after ten years.
What will be done with the results of the study?
The results of this study will be used in publications and in presentations to academic, practitioner and public audiences. We will send you a summary of the results if you would like. The research programme has a website at: www.cancerandsociety.ac.uk
What happens next if I decide to take part?
If you decide you are interested in taking part in this study, please contact us by email on firstname.lastname@example.org or call us on 0131 650 3200. If you have any questions you can use this email address or phone number as well. If you decide to take part, we can get back to you to arrange an interview. After a time and date is arranged, we will send you a consent form to look at prior to the interview. We will provide you with a paper copy of this information sheet and the consent form at the beginning of the interview.
Who should I contact if I have any concerns or a complaint?
If you have questions or concerns about the conduct of the researchers, please get in touch with Professor Sarah Cunningham-Burley at email@example.com or call 0131 650 3200. If you have a complaint and wish to speak with a senior member of staff, please contact:
Professor Harry Campbell
The Usher Institute, Edinburgh
Medical School, The University of Edinburgh, Teviot Place
Edinburgh, EH8 9AG
(firstname.lastname@example.org, 0131 650 3218)
Approval for this study has been obtained from the University of Edinburgh, Centre for Population Health Sciences Research Ethics Committee.
This research project is funded by The Wellcome Trust ‘Society and Ethics’ programme.
The Wellcome Trust is an independent global charitable foundation that aims
to improve lives and health through research and engagement with society.