What role do others play in a woman’s decision to get genetic testing for breast or ovarian cancer?

 

Introduction

 

My name is Mark Wherry. I am a PhD student of Health Psychology and a Trainee Health Psychologist at the University of Surrey. I am conducting a research that will form part of my PhD thesis. I would like to invite you to take part in a research project. Your involvement in this research is voluntary. Before you decide, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and ask questions about anything you do not understand. Talk to others about the study if you wish.

 

What is the purpose of the study?

 

Nowadays, women with a family history of breast cancer and /or ovarian cancer can request genetic testing even if they do not have any symptoms. In some cases, genetic testing will show nothing to worry about. In others, they will indicate the presence of faulty genes. It is important to understand, however, that women at ‘increased risk’ may never be affected with breast or ovarian cancer.

 

Deciding whether or not to be tested can be challenging. As such, these women may share their concerns with others (e.g., partners, family members, etc.). The role of others may (or may not) play a role in the women’s decisions

 

This study aims to understand the role that non-health professionals play in a woman’s decision to have genetic testing for breast or ovarian cancer.

 

Why have I been invited to take part in the study?

 

You have been invited to take part in this study because you responded to an online request for participants. To participate in the study you need to:

 

  • Have made a testing decision in the previous 3 years.

  • Had not received a cancer diagnosis at the time of their decision making.

  • Be a UK resident.

  • Be an adult aged 18 years or over.

  • Have sufficient proficiency in spoken English.

 

Do I have to take part?

No, you do not have to take part. You may ask any questions you like to help make your decision.

If you agree to participate but later change your mind, you will be able withdraw up to six months after your interview without giving a reason and without prejudice. The transcripts of your interview will not be used in the study.

 

 

What will my involvement require?

 

If you agree to take part I will ask you to sign the attached consent form and return it to me by email.

 

The research will last 12 months in total but you would only be asked toanswer a few questions about your experiences,  either via Skype or over the phone .

 

 

What will I have to do?

 

You will only need to answer a few questions once. I will be asking you questions about your decision to be tested. I will also be interested in other people who helped you made this decision. I will ask you to kindly pass on my contact details to them so that they can also contact me if they wish to participate in the study. However, this part is not compulsory.

 

The interview is not likely to last longer than an hour and a quarter. With your permission, I will audio record the conversation for later transcription.

 

What will happen to data that I provide?

By ‘data’, we mean any information you give before or during the interview about yourself or other people. All this information will be stored securely for at least 10 years following their last access and project data (related to the administration of the project, e.g. your consent form) for at least 6 years in line with the University of Surrey policies.

 

Your data will be anonymised before it is used. Your name and any other content that could be used to identify you or anyone mentioned will be removed. With your permission, we would like to use anonymous verbatim quotation in reports.

 

What are the possible disadvantages or risks of taking part?

 

The interview questions may touch on areas of personal health and family history that you may find emotionally difficult. If you find any area of discussion difficult, you will not be obligated to either answer the question or even to continue the interview.

 

If you were to become distressed during interview, the following steps would be taken:

 

  • The interview will be paused to allow you to gather your thoughts and decide if you wished to continue.

  • If required, the interview would be concluded and support offered.

 

Genetic counselling services in the UK are offered through an individual’s GP, you would be encouraged to contact your GP for either general or genetic specific psychological support.

 

You may visit NHS choices genetics webpage and the Macmillan genetics support webpage, as well as the Macmillan advice line 0808 808 00 00.

 

With your permission, I will contact you again the following day to follow up on any issues and check on your welfare needs.

 

What are the possible benefits of taking part?

 

Participants may find value in sharing and reflecting on their experiences of genetic testing and how others influence this decision – if at all.

 

What happens when the research study stops?

 

The study will form part of the researcher’s PhD thesis in Health Psychology research. The study’s findings and anonymised data may be published in academic journals or presented at international conferences. You can request a copy of the final report by email at m.wherry@surrey.ac.uk

 

What if there is a problem?

 

Any complaint or concern about any aspect of the way you have been dealt with during the study will be addressed; in the first instance please contact Dr Cecile Muller, supervisor of research on cecile.muller@surrey.ac.uk.

 

The University has in force the relevant insurance policies which apply to this study.  In addition, the Sponsor has made arrangements, in the event of harm where no legal liability arises, for “non-negligent harm” claims. If you wish to complain, or have any concerns about any aspect of the way you have been treated during this study then you should follow the instructions given above.

 

Will my taking part in the study be kept confidential?

 

Yes. Your details will be held in complete confidence and we will follow ethical and legal practice in relation to all study procedures. Personal data including name, contact details, audio recordings will be handled in accordance with the Data Protection Act 1998 so that unauthorised individuals will not have access to them.

 

Full contact details of the principal investigator and supervisor

 

Principal Investigator

 

Mark Wherry BSc(hons) MSc MPBsS

m.wherry@surrey.ac.uk

Telephone 01483 68 9444

c/o Room 04AC01

School of Psychology

University of Surrey

GU27XH

 

Supervisor

 

Dr Cecile Muller

cecile.muller@surrey.ac.uk

School of Psychology

University of Surrey

GU27XH

 

Thank you for taking the time to read this information.

©2017