[NFBP-BlindParents] Fwd: [Nfbnet-members-list] Blind and low-vision adults needed for research study to learn about your experience with genetic counseling

Stacie Leap stacie.leap at gmail.com
Mon Dec 20 16:00:33 UTC 2021


Hello all:

Just passing along information concerning a study on genetic counseling. I
am not affiliated with this, just sending this out, :)
*Stacie Leap, CPE, CPS*
stacie.leap at gmail.com | 215.776.6741

Board Member, National Federation of the Blind of Pennsylvania: Keystone
Chapter
Cambodian (Khmer) Interpreter
Intern, 3S Technologies LLC
Mental Health First Aid USA Instructor
Volunteer, Eyes Like Mine INC
WRAP (Wellness Recovery Action Plan) Facilitator


---------- Forwarded message ---------
From: Blake, Lou Ann via NFBNet-Members-List <nfbnet-members-list at nfbnet.org
>
Date: Tue, Dec 14, 2021 at 9:55 AM
Subject: [Nfbnet-members-list] Blind and low-vision adults needed for
research study to learn about your experience with genetic counseling
To: nfbnet-members-list at nfbnet.org <nfbnet-members-list at nfbnet.org>


The below research participant solicitation is being provided for
informational purposes only. The National Federation of the Blind has no
involvement in this research.



*Have you ever had genetic counseling? We are looking to learn from you.*

We are conducting interviews to better understand the genetic counseling
experience of patients who are blind or low vision. Through this research,
we’ll explore what educational methods are best for working with this
patient population within the genetic counseling setting. Our hope is that
this research betters the genetic counseling experience for patients who
are blind or low vision, and promotes equitable genetic counseling.

Participants are asked to complete a 5-minute screening phone call and a 40
to 60-minute interview via Zoom about their genetic counseling experience.
All participants will receive a $25 Amazon eGift Card.

Requirements for participation:

·       Identify as blind or low-vision, with limited or no usable sight

·       Received genetic counseling in-person, for any reason within the
past 8 years

·       Over 18 years old

·       Able to participate in an interview in English

Please reach out to Helen Dellas via email (hdellas at brandeis.edu) if you
think you meet these criteria and are interested. If comfortable doing so,
leave your phone number and a good time of day to call so that we can reach
out and schedule an interview.

This study has been approved by the Brandeis University Human Research
Protection Program.





Lou Ann Blake, J.D.

Director of Research Programs, Blindness Initiatives

200 East Wells Street, Baltimore, MD 21230

(410) 659-9314, extension 2221 | lblake at nfb.org





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