Dear Sir or Madam,

We would like to invite you to participate in a study led by the London Business School. Your decision to participate is entirely up to you. Before you decide we would like you to understand why the research is being done and what it would involve for you. 

 

This study consists of filling in a survey. The survey is part of a research project that aims to understand people’s attitudes toward testing for Huntington’s disease and the psychological consequences of testing, for example the consequences on your emotions. We hope that findings of this study could complement consulting procedures for people who have developed or are at risk of developing Huntington’s disease.

For every participant who fully completes this survey, we will donate $2 to the Huntington's Disease Society of America to support their efforts and research.

 

We estimate that you will take approximately 5 minutes to fill in this survey. Please take your time, read the questions very carefully, and respond what you think is most appropriate. There are no right or wrong answers; we are just interested in your opinions. Some questions may stir both pleasant and unpleasant feelings. Other than that, there are no risks involved in this study that you would not encounter in daily life. 

 

Your decision to participate in the study is voluntary. You are also free to withdraw from the survey at any time without giving any reasons and without any consequences, penalties, or losses. 

 

This survey is purely for academic purposes. The results are available to the public in research journals, books and other academic publications. Your data will remain confidential and will be treated anonymously. 

 

If you have any questions or concerns about any aspects of this study, you should speak to the researcher, Simona Botti (email: sbotti@london.edu; phone +44 02070008646). If participating in this research triggers distress let the researcher know and we will arrange for the genetic counselling service, or the Huntington's disease support team, to meet with you. 

 

If you agree to take part in these research studies, and agree to the information outlined above, please select the appropriate response below. By agreeing to participate in this study, you confirm that you are 18 years of age or older, and are participating in this research in a self-employed capacity.