[Nfbnet-members-list] Research announcement for members list

[Blake, Lou Ann]

The below research participant solicitation is being provided for 
informational purposes only. The National Federation of the Blind has 
no involvement in this research, but we believe that it may 
contribute to our research mission.

Research Study: Attitudes of People who are Blind/Low Vision toward 
Gene Editing Technology

1.     A research study is being conducted to learn about the 
thoughts, feelings, and attitudes of people with specific types of 
visual impairment (retinitis pigmentosa and Leber congenital 
amaurosis) toward a new type of technology that is being developed, 
called gene editing.
2.     The goal of the study is to help policymakers and the 
scientific community better understand the views of people who could 
be affected by development of this technology.
3.     Participation will consist of a short questionnaire that 
includes some information about yourself, followed by a 45 to 60 
minute phone interview asking about your life experiences and, after 
hearing some basic information about gene editing, your thoughts and 
attitudes towards it.
4.     You do not need to know anything about gene editing to participate.
5.     There is a brief questionnaire to determine eligibility. If 
you are selected to participate in an interview and complete it you 
will receive compensation for your time.
6.     To be eligible to participate you must be over 18, speak 
English, and have a diagnosis of either Leber congenital amaurosis or 
retinitis pigmentosa.

The study is being conducted by Lily Hoffman-Andrews, a Masters 
student in genetic counseling at Stanford University.

If you are interested in participating, please fill out this brief 
online survey: 
<https://redcap.stanford.edu/surveys/?s=7YDEAJX48Y>https://redcap.stanford.edu/surveys/?s=7YDEAJX48Y

If you have any questions or would like to learn more, you can 
contact Lily at <mailto:lilybha at stanford.edu>lilybha at stanford.edu. 
For participant's rights questions, contact 1-866-680-2906.


Lou Ann Blake, J.D.
Deputy Executive Director, Jernigan Institute
200 East Wells Street, Baltimore, MD 21230
(410) 659-9314, extension 2221| <mailto:lblake at nfb.org>lblake at nfb.org


<https://nfb.org/>
National Federation of the Blind


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The National Federation of the Blind is a community of members and 
friends who believe in the hopes and dreams of the nation's blind. 
Every day we work together to help blind people live the lives they want.




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