Supplementary Material
Risk for Harm in Canadian Genetic counseling Practice
Survey Questions
1) Years in practice
2) Job title
Genetic counselor
Nurse
Nurse Practitioner
Other: (Please Describe)
3) What degree(s) do you hold? (Check all that apply)
B.Sc. / B. A.
Masters Level ABGC accredited genetic counseling training programme
Masters Level Non-ABGC accredited genetic counseling training programme
Non-Clinical M.Sc. / M.S. / M.A. in genetics
BSN / RN
If Other, Please Describe Below:
4) Are you licensed by any regulatory body or college in Ontario (e.g Ontario College of Nurses)
Yes
No
I Don't Know
If yes, please list all:
5) To which professional associations do you currently belong? Please check all that apply.
Canadian Association of Genetic counselors (CAGC)
National Society of Genetic counselors (NSGC)
None - I do not belong to any professional associations
Other:
If other, please specify
6) You previously indicated that you are not currently certified. Please indicate the reason(s) why? (Check all that apply)
Planning to take exam(s) in upcoming cycle
Ineligible in Canada
Ineligible in the United States
Financial constraints
No impact on employment opportunities/reimbursement
Personal Choice
Other: (Please Describe)
7) In what setting do you provide genetic counseling services?(Check all that apply)
Medical Genetics Clinic - In a Hospital Setting
Medical Genetics Clinic - In a Public Health Unit
Medical Genetics Clinic - In a Community/Private Practice
A Paediatric Clinic
A Gastroenterology Clinic
A Family Medicine Clinic
A Surgeon's Office
An Obstetrical Clinic
A Haematology Clinic
An Oncology Clinic
An Ophthalmology Clinic
Other: (Please Specify)
8) From which of the following types of physician(s) within your clinical team(s) do you receive directives? (Please check all that apply)
Definition: A directive is an order (either verbal or written) to perform a controlled act on a patient (such as communicating a diagnosis or ordering a test).
Medical Geneticist
Metabolic Geneticist
Laboratory Director - M.D.
Paediatrician
Family Physician
Gastroenterologist
Obstetrician
Surgeon
Oncologist
Haematologist
Ophthalmologist
Other: (Please Specify)
9) Approximately what percentage of your professional role is allocated to direct patient care? (This includes case preparation, case follow up and face-to-face & telephone interactions with patients, for both genetic counseling cases and medical genetics cases):
10) On average, approximately how many patients do you provide genetic counseling services to each month? (ie the actual number of face-to-face and/or telehealth consultations you provide - include BOTH genetic counseling cases AND medical genetics cases):
11) When consulting to other health care providers, which of the following services do you provide? (Check all that apply)
I do not consult to other health care providers
Information on availability of genetic testing
Interpretation of test results
Information about appropriate referrals
Information about specific genetic conditions
Other: (Please describe)
12) Approximately what percentage of your professional role is allocated to consulting to other health-care professionals (providing information about testing or diseases, laboratory results, or giving advice/guidance)?
13) For each of the following categories please indicate the frequency with which you provide genetic counseling services
NeverInfrequentlyFrequentlyExclusively
Prenatal
Cancer
Paediatric
Adult
Laboratory Services
Newborn Screening
Health Policy/Analysis
Coordination of Clinical Research
14) For each of the cases (by category) described below, please indicate your typical level of involvement for the majority of cases you see in each given category:
Definition of roles:
Autonomous: Genetic counselor provides face-to-face counseling, and there is no face-to-face contact between responsible physician and client for the specified client visit.
Collaborative: Genetic counselor provides face-to-face counseling, responsible physician IS present for a portion of the consultation, OR co-counsels with the genetic counselor
Supportive: Responsible physician counsels client and genetic counselor has supportive role (e.g. does case work-up, prepares requisitions). Genetic counselor may or may not meet with the client face-to-face
N/A: Choose this option if you are not typically involved in this type of case
PRENATAL - Genetic counseling for: Aneuploidy risk
PRENATAL - Genetic counseling for: A fetal ultrasound abnormality
PRENATAL - Genetic counseling for: A fetal ultrasound marker/soft sign e.g. choroid plexus cysts
PRENATAL - Genetic counseling for: A positive prenatal multiple marker screen e.g. FTS, IPS, MSS
PRENATAL - Genetic counseling for: Aneuploidy detected on amniocentesis or CVS
PRENATAL - Genetic counseling for: Single gene disorder confirmed by amniocentesis or CVS in a pregnancy at increased risk (e.g. Fragile X syndrome, spinal muscular atrophy)
PRENATAL - Genetic counseling for: Pregnancy termination
CANCER - Genetic counseling for: Positive family history of a known familial cancer syndrome e.g. Li Fraumeni, Von Hippel Lindau, breast/ovarian cancer syndrome
CANCER - Genetic counseling for: Positive family history for a cancer syndrome with unknown etiology
CANCER - Genetic counseling for: Cancer related health management issues e.g. prophylactic surgery, screening recommendations
CANCER - Genetic counseling for: A positive cancer predisposing gene result in a patient without a previous cancer diagnosis-disclosure of results
CANCER - Genetic counseling for: A negative cancer predisposing gene result in a patient without a previous cancer diagnosis-disclosure of results
CANCER - Genetic counseling for: A positive cancer predisposing gene result in a patient with a previous cancer diagnosis-disclosure of results
CANCER - Genetic counseling for: A negative cancer predisposing gene result in a patient with a previous cancer diagnosis-disclosure of results
GENERAL - Genetic counseling for: A family history of a single gene disorder (e.g. haemoglobinopathies, cystic fibrosis)
GENERAL - Genetic counseling for: Consanguinity
GENERAL - Genetic counseling for: Pre-symptomatic counseling for an adult-onset disorder (e.g. Huntington disease)
GENERAL - Genetic counseling for: Balanced chromosomal rearrangement
GENERAL - Genetic counseling for: Unbalanced chromosomal rearrangement
GENERAL - Genetic counseling for: A genetic syndrome previously confirmed by genetic testing (e.g. Down syndrome, fragile X syndrome)
COMMUNICATING TEST RESULTS for: Positive single gene disorder carrier test results (e.g. cystic fibrosis)
COMMUNICATING TEST RESULTS for: Negative single gene disorder carrier test results (e.g. cystic fibrosis)
COMMUNICATING TEST RESULTS for: Positive confirmatory diagnostic test results in a symptomatic patient (e.g. cystic fibrosis)
COMMUNICATING TEST RESULTS for: Negative diagnostic test results in a symptomatic patient (e.g. cystic fibrosis)
COMMUNICATING TEST RESULTS for: Positive predictive test results for an adult-onset disorder (e.g. Huntington disease)
COMMUNICATING TEST RESULTS for: Negative predictive test results for an adult-onset disorder (e.g. Huntington disease)
15) With respect to the initial communication of a test result (by phone or face-to-face), for each situation below, indicate the type of directive that determines your role, for the majority of cases you see in each given category:
Verbal Directive: The Genetic counselor receives a verbal directive by the responsible physician for a single patient to communicate a result/diagnosis.
Written Directive: The Genetic counselor receives a written directive by the responsible physician for a single patient to communicate a result/diagnosis.
Policy or Delegated Medical Function: There is a formal written departmental or institutional policy that directs the Genetic counselor to communicate a result/diagnosis to a defined group of patients.
No Formal Directive: There is no policy or directive given
N/A: Genetic counselor does not communicate this type of result to patients
Positive single gene disorder carrier test results
Negative single gene disorder carrier test results
Positive confirmatory diagnostic test results in a symptomatic patient (e.g. cystic fibrosis, haemochromatosis)
Negative diagnostic test results in a symptomatic patient (e.g. cystic fibrosis)
Positive predictive test results for an adult-onset disorder (e.g. Huntington's Disease)
Negative predictive test results for an adult-onset disorder (e.g. Huntington's Disease)
Abnormal prenatal diagnosis (CVS/amnio) result
16) For each type of consultation letter, please indicate who typically provides a signature for the majority of cases you see in each given category:
GC/MD both sign: Genetic counselor and responsible physician co-sign
GC only signs: Genetic counselor signs without signature of responsible physician
N/A: Genetic counselor does not sign these types of letters
Letter to patient summarizing genetic counseling session
Letter to physician summarizing genetic counseling session
Letter to patient summarizing genetics assessment (includes physical exam)
Letter to physician summarizing genetics assessment (includes physical exam)
Letter to patient summarizing positive test results
Letter to physician summarizing positive test results
Letter to patient summarizing negative test results
Letter to physician summarizing negative test results
.
17) For cases in which you have face-to-face contact with the patient, HOW OFTEN do you complete and sign the following types of requisitions on the responsible physician's behalf?
Always Most of the Time Sometimes Rarely Never N/A - I don't deal with this type of requisition
Ontario Cytogenetic Requisition
Ontario Molecular Requisition
Request for Amniocentesis/CVS
Requisition for thalassemia screen (haematologic, NOT DNA)
Obstetrical Ultrasound Requisition
Multiple Marker Screen Requisition
Out of Province DNA Requisition
18) What are the main reasons that the genetic counselor signs requisitions on behalf of the responsible physician in your practice (check ALL that apply):
Physician unavailable to sign- off site or inaccessible
There is a written policy in my place of work to sign certain requisitions
I have delegated medical function to sign certain requisitions
More efficient and timely
N/A- Genetic counselors do not sign requisitions in my clinical setting
Other:
19) How often is there a written directive that authorizes the genetic counselor to complete and sign the requisition on the responsible physician's behalf?
Always
Most of the Time
Sometimes
Rarely
Never
N/A - Not necessary as genetic counselors do not sign requisitions in my clinical setting.
20) A Prior-existing relationship between a patient and physician implies that the medically-responsible physician has physically met face-to-face with the patient either at the current visit or during previous visits.
Approximately what percentage of cases that you see for Genetic counseling (i.e.cases that don't require a medical assessment at that visit) have a prior existing relationship with the responsible physician?
21) Attitudes of study group participants towards regulation of health-care practitioners providing genetic counseling services.
For each of the statements below, please indicate if you strongly agree, agree, neutral, disagree, strongly disagree, or don't know.
The level of medical oversight I receive does not adequately ensure that my patients/clients are protected from harm (physical, emotional, or psychological harm). Ontario genetic counselors are sufficiently accountable to the public in their current model of practice. There have been circumstances where the level of supervision I had was inadequate and COULD HAVE caused harm (either physical, emotional or mental) to my patient/client.
There have been circumstances in which the level of medical oversight I received was inadequate and DID cause harm (either physical, emotional or psychological) to my patients/clients.
There are adequate institutional policies, medical directives and/or delegated medical function in my place of work to protect genetic counseling clients from harm (either physical, emotional or mental). There are adequate institutional policies, medical directives and/or delegated medical function to protect myself and my institution from medical-legal risk.
Genetic counseling is a health-care profession with a unique body of skills, knowledge and training. Ontario Genetic counselors possess the specialized knowledge, skills and training needed to allow them to fully abide by their scope of practice.
I have a good awareness of my professional practice leadership organizations (CAGC and/or NSGC) and strive to keep abreast of and abide by current practice guidelines. Persons who have the title of "genetic counselor" in Ontario should demonstrate evidence of specialized academic training and continuing education in their field and/or area of specialty.
The responsibilities of a genetic counselor include counseling and communicating with patients about genetic conditions and providing genetic counseling services in accordance with professional ethics and values.
My professional leadership bodies (CAGC and/or NSGC) are able to favour public interest over professional self-interest.
The genetic counselor-client relationship is based on values of care and respect for the client's autonomy, individuality, welfare, and freedom.
Genetic counselors have an interest in and participate in activities that promote the wellbeing of society and improve access to health care.
I abide by the CAGC and/or NSGC Code of Ethics in my practice of genetic counseling.
Background information for the following 5 questions (22-26):
Members of a regulated healthcare profession must create a college with a rigid structure and function and abide by the rules, regulations, and scope of practice set out by that college. The members must be able to financially support the administration and operation of their college.
22) For each of the comments below, please indicate your level of agreement:
Strongly Agree Agree NeutralDisagreeStrongly DisagreeDon't Know
If genetic counselors become regulated, I am likely to comply with the rules, regulations and scope of practice set out by the regulatory body/ college.
There currently exists a significant risk to cause emotional and/or psychological harm to patients in the practice of genetic counseling.
There currently exists a significant risk to cause physical harm to patients in the practice of genetic counseling.
Regulation of the genetic counseling profession would protect the public from harm
Regulation of the genetic counseling profession would improve public access to services
Regulation of the genetic counseling profession would promote a safer and more effective delivery of genetic counseling services.
I am aware that regulation of the genetic counseling profession would require me to pay dues to a regulatory body or college.
I would be in support of a government subsidy for genetic counseling regulation in the event that the genetic counseling body could not afford to establish an independent regulatory body or college.
I am in support of regulation for the genetic counseling profession.
23) Please indicate how frequently you have experienced OR observed any of the following situations in your practice as a genetics health care provider:
NeverOnly One InstanceA Few InstancesMany InstancesRoutinely ObservedUnsure
A situation in which emotional, psychological and/or physical harm could have potentially occurred to a patient due to the actions or inaction of a genetic counselor (i.e a "close call")
A situation in which emotional, psychological and/or physical harm DID occur to a patient due to the actions or inaction of a genetic counselor
A genetic counselor who was unqualified to provide genetic counseling services
A genetic counselor who did not offer ethnic carrier screening when indicated
A genetic counselor who provided an incorrect risk calculation
A genetic counselor who behaved unethically in clinical practice
A genetic counselor who did not address or follow up on a significant positive finding in a pedigree. A genetic counselor who interpreted a cytogenetic or molecular test result incorrectly
A genetic counselor who provided incorrect, incomplete or inappropriate health screening advice or recommendations
A genetic counselor who provided inappropriate psychosocial support to a patient (ie did not refer a high risk patient, or counselled beyond the scope of practice)
A genetic counselor who behaved inappropriately with a patient
A genetic counselor who did not obtain written or verbal informed consent for genetic testing (research or clinical), and proceeded with testing
24) What specific risks do you think our profession might pose to the public in its current state? In the future? Please feel free to share specific examples from your practice or experiences, where emotional, psychological and/or physical harm COULD HAVE occurred or ACTUALLY occurred to a patient as a result of the actions of a non-MD providing genetic counseling services. Do NOT identify specific individuals or institutions in your response. If you do so accidentally, your response to this question will not be included in the study.
25) Should genetic counselors become a regulated profession, how supportive would you be of the following regulatory options.
Strongly Support Support Neutral Oppose Strongly Oppose Not informed enough to provide opinion
To create a stand alone College of Genetic counselors
To apply as a subsidiary of an existing College (eg Royal College of Physicians and Surgeons of Ontario, Ontario College of Nurses)
26) If a regulatory body for Genetic counselors was formed in Ontario, I would be willing to pay annual fees in the range of (college fees range from several hundred up to two thousand dollars):
Up to $100
Up to $200
Up to $500
Up to $1000
Up to $2000
I would not be willing to pay annual dues to a regulatory body
Other: (Please Specify)
27) Do you have any additional questions, comments or reactions that you wish to share with us? If not, please proceed to the final page of the survey.
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