Study Information and Consent

We are inviting you to participate in a research study. We want to learn more about the experiences of young adults (ages 18-39) with hereditary cancer predisposition syndromes (a genetic condition that increases the chances of developing cancer) with dating and sharing information about a diagnosis to romantic partners. If you join the study, your participation in this research will be limited to an anonymous online survey using SurveyMonkey, which should take no more than 15 minutes to complete. The survey would include questions about if you are dating or are in a relationship, feelings about dating and relationships, timing of disclosing your hereditary cancer predisposition syndrome to a romantic partner, how much to disclose, reasons for disclosure, and feelings about disclosure. The survey also asks about your diagnosis, cancer status, and personal information such as sexual orientation. Participation in this study is voluntary and participating (or not) will have no effect on your care at UAMS or elsewhere, or your employee/student status at UAMS.

The survey will not link your identity to your responses. If you sign up for an optional drawing for a $100 Amazon gift card at the end of the survey, providing your email address will not link it to your responses. We will publish the results of the study but nothing will identify you.

There are people who make sure the study is run the right way. These people may see information from the study about you, but you will not be identifiable. They are
  • OHRP (Office for Human Research Protections), a federal agency
  • UAMS Institutional Review Board
  • Other institutional oversight offices
The risks for this study are no more than what happens in everyday life. The questions asked may cause you to become sad or upset. If you report to the study staff distress as a result of completing the survey, you can be referred to a board-certified counselor for further assessment, who could refer you to an oncology trained psychosocial counselor or social worker, if needed. This assessment or treatment are not part of the study and you would be responsible for any cost involved.

There is also the risk that someone could find out that you were in the study and learn something about you that you do not want others to know. However, responses to the survey are anonymous.

We will keep your survey information for use in future research studies. This information would not be linked to your name.  We will destroy the email addresses submitted for the gift card raffle as soon as the raffle is completed.

If you have questions or concerns about this study, please call the head researcher of the study Erin Hediger at (314-914-1100). You can also call the office that supervises research (UAMS Institutional Review Board) at 501-686-5667 if you have questions about your rights as a research subject or need to speak to someone not directly involved with this study.

Continuing with the survey by clicking “Next” after reading this information will be taken as consent to use the data for this research study.

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