My name is Marissa Lewis, and I am a junior in high school. For the purpose of my Independent Science Research class, and because of my natural love of this topic (my 13 year-old brother has Down syndrome) and science in general, I have created a questionnaire on the feelings of guardians or relations of people with Down syndrome towards their relations participating in genetic therapy studies. I have gotten my project approved by the NYU Institutional Review Board, under the mentorship of Dr. Arthur Caplan (NYU), with help from Dr. Lisa Hall (University of Massachusetts) and Kathryn Sheets (Duke University).
My project will not ask for any identifying personal information, and all responses will be anonymous.
The link takes parents to my study, which includes the actual study questions as well as explanatory information about who I am, what the study is about, and their rights as a participant. The link to the questionnaire is http://www.sogosurvey.com/k/SsSTVWUsRsPsPsP
Thank you for your attention in this regard. I look forward to hearing back from you.