Informed Consent Form for Human Research Subjects

You are being asked to volunteer in a research study called Assessing Parental Perceptions Toward Disclosure of Increased Risk of Psychiatric Illness to their Child with 22q11.2 Deletion Syndrome. This project will be supervised by Monika Zak, CGC –Director of LIU Genetic Counseling Graduate Program – Department of Biology. The purpose of the research is to identify factors that influence parents’ decision to disclose the increased risk of psychiatric illness to their child with 22q11.2 deletion syndrome.

As a participant, you will be asked to answer a series of multiple-choice questions that include demographic information, awareness of manifestations of this condition, experience with psychiatric illness, and attitude towards disclosing risk of psychiatric illness to your child with 22q11.2 deletion syndrome. Completion of the survey will take approximately 20-25 minutes. There are no anticipated risks associated with this study. You can decline to answer any question or discontinue your participation at any point during the survey. While there is no direct benefit for your participation in the study, it is reasonable to expect that the results may provide information of value for the field of genetic counseling.

Your identity as a participant will remain confidential. Your name will not be included in any forms, questionnaires, etc. This consent form is the only document identifying you as a participant in this study; it will be stored securely in Survey Monkey; which is a HIPAA-compliant service, available only to the investigator. Data collected will be destroyed at the end of three years. Results will be reported only in the aggregate. If you are interested in seeing these results, you may contact the principal investigator.

If you have questions about the research, you may contact the investigator, Jennifer Kennedy, jennifer.kennedy2@my.liu.edu or the department chair, Monika Zak, monika.zal@liu.edu. If you have questions concerning your rights as a subject, you may contact the Institutional Review Board Administrator Dr. Lacey Sischo at (516) 299-3591.

Your participation in this research is voluntary. Refusal to participate (or choosing to discontinue participation) will involve no penalty.

I have read and understand the explanation provided to me. By clicking “Next”*, I am giving consent and I voluntarily agree to participate in this study.

Jennifer Kennedy, B.Sc
Primary Investigator