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Version 4: October 2012

Participant Information Sheet for Controls


Genetic Studies in Mental Illness in Pakistan
You are being invited to take part in a research study. Before you decide whether or not to
take part, it is important for you to understand why the research is being done and what it
will involve. Please take time to read the following information carefully. Talk to others
about the study if you wish. Contact us if there is anything that is not clear or if you
would like more information. Take time to decide whether or not you wish to take part.
What is the purpose of the study?
We are trying to understand why some people experience problems with their mental health. At
present, no one knows why this happens, making the search for better treatments difficult.
Environmental factors such as physical illness and stress undoubtedly contribute, but it may be
that sometimes differences in the genetic make-up of people also have an effect.
Why have I been asked to take part?
You have been asked to take part because we want to use your DNA for comparison with
patients who suffer from psychiatric illnesses. We are also researching illnesses related to
schizophrenia and bipolar disorder, depression and anxiety. We aim to invite several hundred
patients and their families to take part in this study and we contribute to international
collaborations with other teams of psychiatrists, which involve thousands of volunteers taking
part in these genetic studies. We make many comparisons between the huge number of tiny
genetic differences found between one individual and another. We hope to find out if these
genetic variations are related in any way to health problems or to their treatments. Technical
terms for the methods we use are linkage, association and gene sequencing exome or whole
genome sequencing studies which have led in recent years to major advances in understanding
many common disorders - cystic fibrosis, asthma, several types of cancer, diabetes and heart
disease.
Do I have to take part?
No, it is up to you to decide whether or not to take part. If you do decide you will be asked to
sign a consent form but you are still free to withdraw at any time and without giving a reason.
What will happen if I take part?
You will be asked to complete an interview of about half an hour and give a single blood sample
(~ 30mls). We will also collect a sample of saliva. This sample will be used for the analysis of
DNA. If you have been admitted to a hospital for treatment at any time we may ask your
permission to read your hospital records to obtain details of symptoms and treatments. We may
ask if you want to be told about follow-on studies but you would be given full details of these and
time to discuss with members of the team before deciding whether or not to take part in any
further studies.
What are the possible benefits of taking part?
There have been recent important discoveries of genetic factors in several common illnesses,
including mental disorders. We hope that these discoveries will lead to new ways of diagnosing,
treating or even preventing these illnesses but these remain long-term aims and you are unlikely
to benefit directly from taking part in this study.
What are the possible disadvantages and risk of taking part?
We do not think there are many disadvantages. However someone with a particular dislike of
giving a blood sample will not be expected to take part. The interviews have been widely used in
the past and do not cause distress.
What happens when the study is finished?
These are long term studies and we can learn a lot about the causes and treatments of mental
illnesses by contributing our local resources to large scale international collaborations comparing

similarities and differences in illnesses world wide. The material from your sample is stored for
use on a long term basis at the University of health Sciences Lahore, University of Edinburgh,
University of Durham, Queens University Canada or other collaborating institutions for use in
future studies. In Edinburgh samples are stored at the Wellcome Trust Clinical Research Facility
at the Western general Hospital as part of a research tissue bank. You will not receive results or
feedback about your sample or have any claim on future commercial use of results from the
studies in which your blood sample has been used. To make best use of resources we will share
data and tissue samples with different groups of workers. This might include other doctors and
scientists in the UK and other countries, including departments of Edinburgh University, other
universities, MRC units or commercial companies.
Will my taking part in the study be kept confidential?
All the information we collect during the course of the research will be kept strictly confidential
and there are strict laws which safeguard your privacy at every stage. Your personal information
will be kept confidential by assigning a code to your sample. Under no circumstances will your
name or any identifying information be passed on to anyone. We will not routinely inform your
doctor that you are taking part and will not pass on any of the information we collect unless we
have significant concerns about your mental or physical health.
What will happen to the results of the study?
Information we obtain from these genetic studies is regularly published in scientific journals and
presented at conferences. Again you will not be identifiable from these reports.
Who is organising the research and why?
Several Psychiatrists and doctors in Pakistan are involved. The DNA from the samples will be
extracted in Pakistan and further analysis will be performed in Durham and Edinburgh or other
laboratories in the UK or another country.
Who has reviewed the study?
Ethical approval has been obtained from the University of Health Sciences Lahore and
permission has also been obtained.
If you have any further questions about the study please contact
Dr Saqib Mahmood
Assistant Professor, Department of Human Genetics & Molecular Biology
University of Health Sciences
Khayaban-e-Jamia Punjab
Lahore-54600, Pakistan
Mobile: 0300-4524556
Email: sqb_medgen@yahoo.com / sasmgenes@hotmail.com
If you would like to discuss this study with someone independent of the study please
contact:
Dr Nadeem Afzal
Associate Professor, Department of Immunology
University of Health Sciences, Khayaban-e-Jamia Punjab
Lahore-54600, Pakistan
Mobile: 0321-4086452
Email:ndmfzl@yahoo.com