Assessing Deaf Cultural Competency: Attitudes and Training of Recent Genetic Counseling Graduates
Assessing Deaf Awareness- Training and Attitudes of Recent Genetic Counseling Graduates
Thank you for choosing to participate in my survey.
The goal of this project is to evaluate Deaf awareness among genetic counselors to determine if there
are associations between training and experiences, and Deaf awareness, knowledge and attitudes
towards Deaf culture. We are also interested in counselors' opinions on how to improve Deaf awareness
training in genetic counseling programs.
You are being asked to participate in an online survey for a research project conducted through Brandeis
University. The University requires that you give your approval to participate in this project. You must
be at least 18 years old to take this survey.
Your participation in the study is completely voluntary. If you decide to participate now, you may
change your mind and stop at any time, for any reason, without penalty. You can choose to not answer
an individual question or you may skip any section of the survey by clicking “Next” at the bottom of the
survey page to move to the next question.
By clicking the "Next" button, you are consenting to participate in this study.
The following questions pertain to your experience as a Genetic Counselor
Q1 <br>How many years have you been practicing as a Genetic Counselor?
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Up to 1 year (1)
1-2 years (2)
2-3 years (3)
3-4 years (4)
4-5 years (5)
Q2 What is your primary counseling setting as a Genetic Counselor?(Select all that apply)<br>
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Adult (1)
Cancer (2)
General Genetics (3)
Laboratory (4)
Pediatric (5)
Prenatal (6)
Other (Please specify) (7) ____________________
Q3 How long have you been at your current position?
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less than 6 months (1)
1 year (2)
2 years (3)
3 years (4)
4 years (5)
5 years (6)
Q4 In which fields have you worked? Select all that apply.
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Adult (1)
Cancer (2)
General Genetics (3)
Laboratory (4)
Prenatal (5)
Pediatric (6)
Other (7) ____________________
The following questions address interactions with the Deaf Community:
Q5 <br>Are you Hearing, Hard of Hearing, or Deaf?
 Hearing (1)
 Hard of Hearing (2)
 Deaf (3)
Q6 Do you consider yourself part of the Deaf community?
 Yes (1)
 Occasionally (2)
 No (3)
Q7 Do you have a family member who was born deaf?
 Yes (1)
 No (2)
If No Is Selected, Then Skip To Do you have culturally Deaf friends, ...
Q8 Which family member was born deaf? Select all that apply.
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Child (1)
Mother (2)
Father (3)
Brother/Sister (4)
Uncle/Aunt (5)
Grandparent (6)
Cousin (7)
Other (Please specify) (8) ____________________
Q9 Do you have culturally Deaf friends, i.e., who identify with the Deaf community
 Yes (1)
 I do not know (2)
 No (3)
Q10 Do you have deaf friends who do not identify with the Deaf community?
 Yes (1)
 I do not know (2)
 No (3)
Q11 How often do you interact with deaf or hard of hearing people outside of working as a genetic
counselor?
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Never (1)
Less than Once a Month (2)
Once a Month (3)
2-3 Times a Month (4)
Once a Week (5)
2-3 Times a Week (6)
Daily (7)
Q12 Where do these interactions take place?
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At home (1)
Circle of friends (2)
Volunteering (3)
Work other than genetic counseling (4)
Other (Please specify) (5) ____________________
Q13 Do you have deaf or hard of hearing colleagues at your workplace?
 Yes (1)
 Not sure (2)
 No (3)
Q14 Do you counsel deaf patients at your current job?
 Yes (1)
 No (2)
Q15 How many deaf patients have you counseled in the past year?
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None (1)
1-10 (~less than once a month) (2)
11-20 (~2x a month) (3)
21-48 (~once a week) (4)
More than 48 patients (more than once a week) (5)
Q16 At which Genetic Counseling specialty did you encounter the most deaf patients?
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Adult (1)
Cancer (2)
General Genetics (3)
Laboratory (4)
Pediatrics (5)
Prenatal (6)
Other (Please Specify) (7) ____________________
Not Applicable (8)
Q17 <p>When do you ascertain your deaf patients’ preferred mode of communication?</p>
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Inquire ahead of appointment (1)
Inquire at the beginning of the appointment (2)
Inquire during the appointment (3)
I do not inquire (4)
Never had a deaf patient (5)
Q18 What modes of communication have you used at work to interact with your deaf patients?
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Certified ASL interpreter (1)
Patient’s family member or friend acts as interpreter (2)
Your own knowledge of ASL (3)
Relying on the patient's ability to lip read (4)
Hand gestures (5)
Writing back and forth (6)
Never had a deaf patient (7)
Other (Please specify) (8) ____________________
Q19 How often have you used a certified American Sign Language (ASL) interpreter when counseling a
deaf patient whose preferred language is ASL?
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Never had a deaf patient (1)
Never (2)
Occasionally (3)
Most of the time (4)
Every time (5)
Q20 Do you know how to secure the services of a certified ASL interpreter if needed?
 Yes (1)
 No (2)
Q21 Have you taken courses in ASL?
 Yes (1)
 No (2)
Q22 How well can you communicate in ASL?
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Not at all (1)
Poorly (2)
Moderately (3)
Fluently (4)
Q23 On a scale from 1 to 5, how interested are you in learning ASL?
No Interest (1)
(1)
Interest in
learning ASL
(1)
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Somewhat
Interested (2)
(2)
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Interested (3)
(3)
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Very
interested (4)
(4)
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Currently
taking ASL
lessons/
Already know
ASL (5) (5)
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Q24 If interested in learning ASL, what motivates you to learn ASL?
The following questions address Deaf awareness training
Q25 <br>Did you have any Deaf awareness training in your genetic counseling program?
 Yes (1)
 No (2)
If No Is Selected, Then Skip To The Genetic Counseling Cultural Compe...
Q26 Who conducted the Deaf awareness training?
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Genetic Counseling program instructor (1)
Member of the Deaf community (2)
Parent of a deaf child (3)
Child of a deaf parent (4)
Member of a deaf advocacy group (5)
Licensed American Sign Language interpreter (6)
Other (Please specify) (7) ____________________
Q27 What tools did your graduate program use to increase your Deaf awareness?<br>Please select all
that apply.
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Readings (1)
Movies/Documentaries (2)
Guest Lecturers (Hearing) (3)
Guest Lecturers (Deaf) (4)
Discussions (5)
Field Trips (6)
Role Plays (7)
Other (Please Specify) (8)
Q28 <p>In the space provided please provide the name of any learnings tools that you found particularly
helpful </p><p>(e.g. names of movies, guest lecturers, online trainings, field trip sites, etc.</p><p> </p>
Q29 What topics were covered during the Deaf awareness training?
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American Sign Language interpreters (1)
Cochlear implants (2)
Communicating with a Deaf individual (3)
Deaf community and culture (4)
Genetics of deafness (5)
Introduction to American Sign Language (6)
Relationship between culture and langauge (7)
Terminology and types of deafness (8)
Other (Please specify) (9) ____________________
Q30 What was the duration of the deaf awareness training you received? (Ex. 1 hour class, 2 day
training, etc.)
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1-2 hour class (1)
Half a day training (2)
1 day training (3)
2 day training (4)
3-4 day training (5)
1 week long training (6)
1 semester internship (7)
Other (Please specify) (8) ____________________
Q31 Please describe other aspects of your Deaf awareness training if they were not addressed in the
previous questions
Q32 The Genetic Counseling Cultural Competence Toolkit was created by the 2009 JEMF award winner,
Nancy Steinberg Warren to promote culturally competent genetic counseling by using online learning
modules. <br><br>In this toolkit, there is a module on "Risk Assessment/Inheritance/Counseling and
Deaf Culture". <br><br><br>Are you aware of the Genetic Counseling Cultural Competence Toolkit?
 Yes (1)
 No (2)
If No Is Selected, Then Skip To To what extent do you agree or disagr...
Q33 How have you applied the Genetic Counseling Competence Toolkit in your counseling practices?
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Have only skimmed the toolkit, not fully explored (1)
Fully explored the toolkit but do not think it is helpful for practice (2)
Fully explored the toolkit and intend to apply to practice (3)
Fully explored and have applied some learning from it to practice (4)
Fully explored and fully apply it to practice (5)
Other (Please specify) (6) ____________________
Q34 For what purposes have you used the Genetic Counseling Competence Toolkit?
Q35 <br>To what extent do you agree or disagree with the following statements:
Strongly
Disagree
(1)
Disagree
(2)
Neither
Agree nor
Disagree
(3)
Agree (4)
Strongly
Agree (5)
You are interested in participating
in the "Risk
Assessment/Inheritance/Counseling
and Deaf Culture" online module to
increase your Deaf awareness. (1)
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You think Genetic Counseling
programs should incorporate the
Genetic Counseling Cultural
Competence Toolkit into their
graduate training. (2)
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Q36 For the following questions, please click on the answer that best describes your attitude towards
Deaf awareness training
Strongly
disagree (1)
Disagree (2)
Neither Agree
nor Disagree
(3)
Agree (4)
Strongly Agree
(5)
Deaf
awareness
training was
sufficient
during your
graduate
training (1)
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Genetic
counseling
programs
should have
more
emphasis on
deaf
awareness (2)
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Having deaf
awareness
training would
help you
become a
better
counselor for
the Deaf. (3)
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Q37 <br>The following statements relate to deafness and Deaf culture.<br>Please state to what extent
you agree or disagree with the following statements
Strongly
Disagree (1)
Disagree (2)
Neither Agree
nor Disagree
(3)
Agree (4)
Strongly Agree
(5)
1. Deaf
couples should
receive genetic
counseling to
avoid having
deaf children.
(1)
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2. Deaf
children
should learn to
speak to
communicate
with hearing
parents. (2)
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3. I would like
to have more
deaf friends.
(3)
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4. Deaf schools
and deaf clubs
create deaf
“ghettos.” (4)
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5. Deaf people
should learn
speech rather
than sign
language. (5)
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6. Deaf people
are
handicapped.
(6)
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7. More
research
should be
done to find
cures for
deafness. (7)
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8. Deaf
children
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should be
taught in sign
language. (8)
9. Hearing
children of
deaf parents
are at risk of
emotional
deprivation.
(9)
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10. Deaf
people are
safe drivers.
(10)
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11. I would like
to have more
deaf
colleagues.
(11)
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12. Deaf
people should
learn to lipread. (12)
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13.
Interpreters
should be
available for
deaf people at
work. (13)
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14. Deaf
people should
automatically
receive help in
their home
environment.
(14)
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15. All deaf
people should
be offered
corrective
surgery. (15)
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16. Training
more
professionals
to work with
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deaf clients
would be a
waste of time.
(16)
17. Having a
deaf colleague
would cause
problems in
the workplace.
(17)
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18. Deaf
people are
physiologically
impaired. (18)
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19. Deaf
people should
not be viewed
as “impaired.”
(19)
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20. I would like
to see more
deaf people at
club/societies I
attend. (20)
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21. Having a
deaf friend
would be
difficult. (21)
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22. Deaf
people have
their own
culture. (22)
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Questions 41-46 pertain to Deaf Culture in the Medical Setting. <br><br>Please select the best answer
to the following questions.
Q38 <br>A cochlear implant:
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Will allow a deaf adult to immediately begin hearing and understanding oral conversations (1)
Destroys any residual hearing in the ear that the patient may have had (2)
Corrects for any type of hearing loss (3)
Is desired by at least 90% of deaf people (4)
Do not know (5)
Q39 In a medical setting, it is the right of the deaf patient:<br>(Select all that apply)
 To express a preference for a particular interpreter (1)
 To be provided an interpreter by the provider (2)
 To determine how much personal information he/she wants to disclosed in an interpreted situation
(3)
 Do not know (4)
Q40 The hospital has arranged for you to give a presentation on an important health topic with the
assistance of an ASL interpreter. The audience, which consists mainly of deaf patients, are all socializing
prior to the presentation. You are ready to begin your presentation. You should:<br>(Select all that
apply)
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Stand on stage and wait patiently for the audience to settle down (1)
Flick the light on and off several times in order to get the audience's attention (2)
Clap loudly (3)
As the interpreter to sign that you are ready to begin (4)
Do not know (5)
Q41 In an consultation room, where would you suggest the patient and interpreter to sit? <br>
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Place the interpreter beside the patient. The patient and the interpreter are facing the provider (1)
Place the interpreter beside the provider. The provider and interpreter are facing the patient (2)
Place the interpreter at an equal distance between the provider and the patient (3)
Do not know (4)
Q42 You have a deaf couple who declines to have their newborn baby's hearing tested. You should: <br>
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Tell them this is required by law, and that it has to be done for their baby's benefit (1)
Tell them it is their decision, but explain that this lack of knowledge will put their baby at risk (2)
Accept their decision (3)
Do not know (4)
Q43 You go to get your patient from the waiting room. You call for your patient several times. Others in
the room point to a person reading a magazine and say "She's deaf". You should:<br>(Select all that
apply)
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Approach the patient and gently tap her on the shoulder (1)
Approach the patient and call their name louder (2)
Approach the patient making small gestures in her field of vision to try to get her attention (3)
Do not know (4)
Q44 The following questions pertain to Deaf Culture in the Medical Setting. <br>Please identify the
following statements as either True or False.
True (1)
False (2)
1. Only 30% of the English
language can be accurately lip
read (1)
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2. You are running considerably
behind schedule. Your deaf
patient is waiting with his/her
interpreter. The interpreter is
ethically bound to wait with the
patient until you are ready to
see them. (2)
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3. ASL is a pictorial language that
produces a word-for-word
translation of what is being said
in English. (3)
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4. The majority of hearing
parents with deaf children never
learn to sign. (4)
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5. When communicating with a
deaf patient through an
interpreter, you should face the
interpreter and explain to the
interpreter what the patient
needs to know. (5)
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6. Trying to help cure your
patient's deafness should be
your top priority (6)
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7. Because deaf people rely
upon printed forms of
information, their literacy is
equal to or better than the
general public. (7)
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8. A good interpreter will be able
to step out of his/her
interpreting role in order to
explain to the provider what the
patient is really trying to say. (8)
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9. When there is a dominant
source of light, such as a
window, your deaf patient
should be seated with his/her
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back to the light source and you
should be seated facing the light
source. (9)
10. For an infant, there is very
little that can be done to
improve an infant's hearing due
to its age (10)
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11. When speaking to a deaf
patient through an interpreter
you should speak each word
very slowly, to allow the
interpreter time to sign or
fingerspell your words. (11)
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12. For most members of the
deaf community, English is their
primary language. (12)
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13. When a deaf patient is
hospitalized, the entire staff
should be notified that the
patient is deaf. (13)
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14. When hiring an interpreter,
the minimum time per session is
two hours. (14)
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15. At the end of the health care
visit, the interpreter should
again review the information
with the patient. (15)
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16. Early in the conversation,
your patient mentions to you
that he has Usher's syndrome.
This information will influence
how you communicate with him.
(16)
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17. Deaf patients generally do
not participate in support groups
such as those that help patients
cope with disease or death. The
main reason for this is due to the
language barrier. (17)
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18. On average, deaf patients
report that they are unable to
convey adequate information to
their doctors. (18)
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19. Less than 50% of physicians
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who have deaf patients use a
certified interpreter. (19)
20. Working with other minority
and/or disabled population will
adequately prepare a health
care provider to work with the
deaf. (20)
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21. 90% of deaf people have
hearing parents. (21)
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22. If a child is found to have a
hearing loss, you should also
refer the child to an optometrist.
(22)
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23. It is the patient's
responsibility to schedule the
interpreter if they think one will
be needed. (23)
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24. You have complicated
information to communicate to
a deaf patient, so it would be
wise to tell the patient to bring
along a friend or family member
to assist with the interpretation.
(24)
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25. If the patient requests an
interpreter for a visit with their
health care provider, it is the
patient's responsibility to pay for
the interpreter. (25)
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26. If a deaf patient requests an
interpreter, you may ask your
nurse, who has taken several
semesters of ASL classes, to
interpret for the consultation.
(26)
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27. If you suspect hearing loss in
an infant, you should make a
note to recheck the infant’s
hearing on the next visit. (27)
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28. American Disabilities Act
requires an interpreter be
present whether the patient
wants one or not. (28)
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Please answer the following questions pertaining to demographics
Q45 <br>What is your gender?
 Male (1)
 Female (2)
Q46 What is your age?
Q47 Please select your ethnicity
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African American (1)
Asian (2)
Caucasian (3)
Hispanic/Latin American (4)
Native American (5)
Pacific Islander (6)
Other (7) ____________________
Q48 Which Genetic Counseling Program did you graduate from?
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Arcadia University (1)
Boston University School of Medicine (2)
Brandeis University (3)
California State University- Stanislaus (4)
Case Western Reserve University (5)
Howard University (6)
Indiana University Medical Center (7)
Johns Hopkins Univ. / National Center for Human Genome Research (8)
Long Island University- C.W. Post (9)
McGill University (10)
Medical College of Virginia (11)
Mt. Sinai School of Medicine (12)
Northwestern University Medical School (13)
Sarah Lawrence College (14)
Stanford University (15)
University of Alabama (16)
University of Arkansas (17)
University of British Columbia (18)
University of California-Irvine (19)
University of Cincinnati College of Allied Health Sciences (20)
University of Colorado Health Science Center (21)
University of Maryland School of Medicine (22)
University of Michigan- Ann Arbor (23)
University of Minnesota (24)
University of North Carolina- Greensboro (25)
University of Pittsburgh (26)
University of South Carolina (27)
University of Texas Graduate School of Biomedical Sciences (28)
University of Toronto (29)
University of Utah Health Sciences Center (30)
University of Wisconsin- Madison (31)
Wayne State University (32)
Other (Please Specify) (33)
Answer If Which Genetic Counseling Program did you graduate from? Other (Please Specify) Is Selected
Q48 Which Genetic Counseling Program did you graduate from?
Q49 What year did you graduate from your program?
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2012 (1)
2011 (2)
2010 (3)
2009 (4)
2008 (5)
Other (6) ____________________
Q50 Do you have any suggestions/opinions/comments on how to increase genetic counselor's Deaf
awareness towards the Deaf community?