Supplement 1: Survey - Ethical Dilemmas Associated With Genetic Testing
SECTION A: Professional Demographics
1.To which profession do you belong?
Clinical Geneticist
Genetic Counsellor
Genetic Social Worker
Other ______
2.Do you see clients on a regular basis for genetic consultation?
Yes
NoThank you, there are no further questions.
------
3.For how many years have you practiced in genetics?
___
4.How many clients do you see for genetic consultation in a typical week?
___
SECTION B: ETHICAL DILEMMAS
Please consider each of the following ethical situations and indicate whether you have encountered each of them in your professional practice. If you answer yes to any of these questions you will then be asked how often you have encountered the ethical situation, how you dealt with these instances and for further comments. If you answer no to any of these questions you will be directed to the next ethical situation.
5.Have you been involved with a case where misattributed paternity has been an issue?
Yes
No
------
AHow many times have you been involved with cases of misattributed paternity?
___
BHow have you dealt with misattributed paternity when it has arisen? (Tick all that apply)
i.Consulted peers
ii.Consulted supervisor
iii.Referred clients to another professional
iv.Consulted established guidelines
v.Referred for Clinical Ethics Committee review
vi.Information withheld (none of the family members informed)
vii.Informed the woman
viii.Informed the alleged father
ix.Informed the biological father
x.Informed the child
xi.Other ______
CIs there any further information or comments about these cases that you would like to share?
______
6.Have you been involved in a case where genetic testing, such as a microarray study, has revealed that the tested individual was the product of an incestuous relationship?
Yes
No
------
AHow many times have you been involved with cases where genetic testing has revealed an incestuous relationship?
______
BHow have you dealt with cases where genetic testing has revealed an incestuous relationship when it has arisen? (Tick all that apply).
iConsulted peers
iiConsulted supervisor
iiiReferred for Clinical Ethics Committee Review
ivReferred clients to another professional
vDiscussed the finding with the client/family
viSought legal advice and/or Informed the police
viiOther ______
CIs there any further information or comments about these cases that you would like to share?
______
7.Have you been requested to provide genetic testing for adult onset conditions to a mature minor? A mature minor is defined here as someone younger than age 18 years, but old enough to understand the issues involved.
Yes
No
------
AHow many times have you been requested to provide genetic testing to mature minors for adult onset conditions?
______
BHow have you dealt with requests for provision of genetic testing of mature minors for adult-onset conditions when they have arisen? (Tick all that apply)
iConsulted peers
iiConsulted supervisor
iiiReferred clients to another professional
ivConsulted professional guidelines
vReferred for Clinical Ethics Committee review
viProvided the test
viiRefused to provide the test
viiiOther ______
COn how many of the occasions in which you have been requested to provide genetic testing to a mature minor for adult-onset conditions have you refused to provide the test?
______
DIs there any further information or comments about any of these cases that you would like to share?
______
8.Have you been requested to provide genetic testing for adult onset conditions to an immature minor? An immature minor is defined here as someone younger than age 18 years and too young to understand the issues involved.
Yes
No
------
AHow many times have you been requested to provide genetic testing to immature minors for adult onset conditions?
______
BHow have you dealt with requests for genetic testing for adult onset conditions of immature minors when it has arisen? (Tick all that apply)
i.Consulted peers
ii.Consulted supervisor
iii.Referred clients to another professional
iv.Consulted professional guidelines
v.Referred for Clinical Ethics Committee review
vi.Provided the test
vii.Refused to provide the test
viii.Other ______
COn how many of the occasions in which you have been requested to provide genetic testing to an immature minor for adult-onset conditions have you refused to provide the test?
______
DIs there any further information or comments about these cases that you would like to share?
______
9.Have you been requested to provide testing to a competent third party without their knowledge? E.g. a request to test a teenager for a genetic condition while simply telling them they are having a blood test for something else.
Yes
No
------
AHow many times have you been requested to provide a test to a competent third party without their knowledge?
______
BHow have you dealt with requests for testing a competent third party without their knowledge when they have arisen? (Tick all that apply)
iConsulted peers
iiConsulted supervisor
iiiReferred clients to another professional
ivReferred for Clinical Ethics Committee review
vProvided the test without informing the person being tested about its true nature.
viProvided the test after informing the person being tested of the true nature of the test.
viiRefused to provide the test
viiiOther ______
COn how many of the occasions in which you have been requested to provide a genetic test to a competent third party without their knowledge have you refused to provide the test?
______
DIs there any further information or comments about these cases that you would like to share?
______
10.Have you been involved in a case involving predictive testing of monozygotic twins where only one of the twins wanted to know their genetic status?
Yes
No
------
AHow many times have you been involved with a case of only one twin wanting to know their genetic status?
______
BHow have you dealt with cases where only one monozygotic twin wanted to know their genetic status? (Tick all that apply)
i.Consulted peers
ii.Consulted supervisor
iii.Further discussion with the client wanting to know their status
iv.Discussed testing with the twin who did not wish to know his/her status
v.Informed both twins of the results
vi.Informed only the twin wishing to know his/her status of the results
vii.Refused to provide the test
viii.Referred for Clinical Ethics Committee review
ix.Other ______
COn how many of the occasions in which only one monozygotic twin wanted to know their genetic status have you refused to provide the test?
______
DIs there any further information or comments about these cases that you would like to share?
______
11.Have you been involved in a case in which testing could potentially have revealed information about a non-consenting third party? E.g. where a grandchild of someone who had Huntington disease wished to know their genetic status, but their parent did not want to know. This is often called ‘testing at 25% risk’.
Yes
No
------
AHow many times have you been involved with a case where testing could have revealed information about a non-consenting third party?
____
BHow have you dealt with cases where testing could have revealed information about a non-consenting third party when it has arisen? (Tick all that apply)
i.Made direct contact with the third party to discuss testing
ii.Asked client to facilitate contact with the third party
iii.Consulted peers
iv.Consulted supervisor
v.Referred for Clinical Ethics Committee review
vi.Provided the test
vii.Refused to provide the test
viii.Other ______
COn how many of the occasions in which testing could have revealed information about a non-consenting third party have your refused to provide testing?
______
DIs there any further information or comments about these cases that you would like to share?
______
12.Have you been involved in a case in which sex selection for social reasons has been requested?
Yes
No
------
AHow many times have you been involved with a case in which sex selection for social reasons has been requested?
______
BHow have you dealt with requests for sex selection for social reasons when they have arisen? (Tick all that apply)
i.Consulted peers
ii.Consulted supervisor
iii.Referred clients to another professional
iv.Consulted professional guidelines
v.Referred for Clinical Ethics Committee review
vi.Provided the test
vii.Refused to provide the test
viii.Other ______
COn how many of the occasions in which requests for sex selection for social reasons have arisen have you refused to provide the test?
_____
DIs there any further information or comments about these cases that you would like to share?
______
13.Have you been involved in a case where clients have requested selection for a disability through prenatal diagnosis or pre-implantation genetic diagnosis? E.g. a couple where one or both have achondroplasia wanting a child with achondroplasia.
Yes
No
------
AHow many times have you been involved with cases where clients have requested selection for a disability?
______
BFor what conditions have you been requested to provide selection for a disability?
______
CHow have you dealt with requests for selection for a disability when they have arisen? (Tick all that apply)
iConsulted peers
iiConsulted supervisor
iiiConsulted professional guidelines
ivReferred for Clinical Ethics Committee review
vProvided testing
viDeclined the request
viOther ______
DOn how many of the occasions in which selection for a disability has been requested have you refused to provide the test?
______
EIs there any further information or comments about these cases that you would like to share?
______
14.Have you been involved in a case where clients have requested the selection by pre-implantation genetic diagnosis of a child immunologically matched to enable donation of stem cells to a sick sibling?
Yes
No
------
AHow many times have you been involved with cases where pre-implantation genetic diagnosis has been requested to select a child who can donate stem cells to a sick sibling?
______
BHow have you dealt with cases involving selection for a sibling for stem cell donation when it has arisen? (Tick all that apply)
iConsulted peers
iiConsulted supervisor
iiiReferred clients to another professional
ivConsulted professional guidelines
vReferred for Clinical Ethics Committee review
viFacilitated the process
viiRefused to facilitate the testing process
viiiOther ______
COn how many of the occasions in which selection for a sibling for stem cell donation has been requested have you refused to facilitate the test?
______
DIs there any further information or comments about these cases that you would like to share?
______
15.Have you been involved in a case where clients have refused to disclose relevant information to at-risk relatives where there is a risk of disease? E.g. the relative’s risk of having a BRCA mutation.
Yes
No
------
AHow many times have you been involved with cases where non-disclosure to at-risk relatives of disease has been an issue?
______
BHow have you dealt with cases where non-disclosure to at-risk relatives when it has arisen? (Tick all that apply)
iConsulted peers
iiConsulted supervisor
iiiReferred clients to another professional
ivConsulted professional guidelines
vReferred for Clinical Ethics Committee review
vInformed at-risk family members directly
iiiTook no further action
ivDirected the client to tell at-risk family members
viiiOther ______
CIs there any further information or comments about these cases that you would like to share?
______
16.Have you been involved in any other cases which have posed ethical issues not covered in this survey?
Yes
No
A.What ethical issues arose in these cases?
______
BHow many of each of those situations you listed in 16A have you dealt with?
______
C.How were these ethical issues dealt with?
______
D.Is there any further information or comments about these cases that you would like to share?
______
SECTION C:PERSONAL DEMOGRAPHICS
17.What is your gender?
Male
Female
18.What is your age?
_____
19.With which ethnic grouping do you identify?
Caucasian
Asian
Pacific Islander
African
Aboriginal
Maori
Torres Strait Islander
Other (please specify) ______
20.In which state/country do you normally practice?
ACT
NSW
NT
QLD
TAS
VIC
SA
WA
New Zealand
21.In which setting(s) do you work? (tick all that apply)
Public Hospital
Private Hospital
Community Health Centre
Government funded Genetics Service (other than public hospital)
Private practice
University/Research Institute
Other (please specify) ______
22.What percentage of your work-time is allocated to the following during any given week? (Total should add to 100%).
Client related activities
Research
Teaching
Administration (non-client related)
Other (please specify) ______
23.In what area(s) do you practice? (Tick all that apply)
Adult Genetics
Assisted Reproductive technology/Pre-implantation Genetics
Cardiovascular Genetics
Cancer Genetics
General Genetics
Genetic Screening
Metabolic Genetics
Neurogenetics
Paediatric Genetics
Prenatal Genetics
Psychiatric Genetics
Other (please specify) ______
24.Do you have any further comments in relation to any of the questions you have been asked in this survey or about the survey in general?
25.Would you be happy to be contacted to briefly clarify any issues that may have arisen from your answers to this survey?
Yes
No
AName ______
BContact telephone number ______
1