Supplemental Table 1: List of Documents Examined by Organization
Name of
Retained
Doc ID
Organisation
Health Professional Association (HPA)
Alberta Medical
0
Association
American
3
HPA1
College of
Medical Genetics
and Genomics
HPA2
American
Medical
Association
British Columbia
2
0
Titles of Documents Retained
Reference (website or description of printed
material)
Duty to re-contact (1999)
http://www.acmg.net/StaticContent/StaticPages/Duty_t
o_Recontact.pdf
Carrier screening in individuals
of Ashkenazi Jewish descent
(2008)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC31109
77/pdf/18197057.pdf
HPA3
ASHG/ACMG Report – Points
to consider: Ethical, Legal, and
Psychosocial Implications of
Genetic Testing in Children and
Adolescents (1995)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC18013
55/pdf/ajhg00037-0249.pdf
HPA4
E-2.131 Disclosure of Familial
Risk in Genetic Testing
http://www.ama-assn.org/ama/pub/physicianresources/medical-ethics/code-medicalethics/opinion2131.page
HPA5
E-2.137 Ethical Issues in Carrier
Screening of Genetic Disorders
http://www.ama-assn.org/ama/pub/physicianresources/medical-ethics/code-medicalethics/opinion2137.page
Medical
Association
Canadian
1
Association of
Genetic
Counsellors
Canadian
0
Association of
Medical
Oncologists
Canadian College 1
of Medical
Geneticists
Canadian
Medical
Association
Collège des
médecins du
Québec
0
College of
Physicians and
Surgeons of
Alberta
College of
Physicians and
0
1
0
HPA6
Code of Ethics for Canadian
Genetic Counsellors (2006)
https://cagcaccg.ca/images/docs/Professional_Issues/code%20of%
20ethics%20e-070628.pdf
HPA7
Guidelines for Genetic Testing
of Healthy Children (2003)
http://www.ccmgccgm.org/_includes/ckfinder/userfiles/files/Policies%2
C%20Reports%20and%20Position%20Statements/Pos
ition%20Statements/PosStmt_EPP_PedGenTest_Jan20
03.pdf
HPA8
Legal, Ethical and
Organizational Aspects of
Medical Practice in Québec –
ALDO-Québec (2010)
http://www.mcgill.ca/files/medicine-academic/LegalEthical-Organization-Aspects-Medical-PracticeQuebec.pdf
Surgeons of
British Columbia
College of
Physicians and
Surgeons of
Newfoundland
and Labrador
College of
Physicians and
Surgeons of
Nova Scotia
College of
Physicians and
Surgeons of
Ontario
National Society
of Genetic
Counselors
Newfoundland
and Labrador
Medical
Association
0
0
0
2
0
HPA9
“Your Family History” (website) http://www.nsgc.org/About/FamilyHistoryTool/tabid/2
26/Default.aspx
HPA10
Risk Assessment and Genetic
Counseling for Hereditary
Breast and Ovarian Cancer:
Recommendations of the
National Society of Genetic
Counselors
http://www.springerlink.com/content/t01m017w16412
k57/fulltext.pdf
Nova Scotia
Doctors
Ontario Medical
Association
The Canadian
Oncology
Societies
0
0
0
Health Service Organization (HSO)
Cancer Care
0
Ontario
Centre hospitalier 1
HSO1
de l’Université de
Montréal –
Service de
médecine
génique
Centre Oscar
1
HSO2
Lambret
Dana-Farber
Cancer Institute,
Cancer Risk and
Prevention Clinic
EuroGentest
Informations aux membres de la
famille
Letter
Résumé des connaissances sur
les cancers du sein et de l’ovaire
héréditaires
Summary document
1
HSO3
Hereditary Breast and Ovarian
Cancer
Information sheet
4
HSO4
Frequently Asked Questions:
Information for Patients and
Families
http://www.eurogentest.org/blocks/leaflets/pdf/english/
FAQ.pdf
Fédération
Nationale des
Centres de Lutte
Contre le Cancer
Genetic Services
of Western
Australia
Government of
Western
Australia,
Department of
Health
Hereditary
Cancer Clinic,
Institute of
Oncology, Prince
of Wales
Hospital
McGill
HSO5
What is a Genetic Test?
http://www.eurogentest.org/blocks/leaflets/pdf/english/
genetic_test.pdf
HSO6
Carrier Testing: Information for
Patients and Families
http://www.eurogentest.org/blocks/leaflets/pdf/english/
carrier_testing.pdf
HSO7
Quelques informations sur votre
consultation: Information pour
les malades et leurs familles
http://www.eurogentest.org/blocks/leaflets/pdf/french/
some_info.pdf
1
HSO8
Le risque familial de cancer du
sein et/ou de l’ovaire
http://www.cancersdusein.curie.fr/sites/default/files/He
redite-Sein-Ovaire_Guide-Inca.pdf
1
HSO9
Breast and Ovarian Cancer in
the Family
Pamphlet
1
HSO10
BRCA Positive Pack
Pamphlet
1
HSO11
What Jewish Women Should
Know About Breast and Ovarian
Cancer
Information Booklet
2
HSO12
Family Medical Information
Generic letter
University Clinic
MD Anderson
Cancer Center,
University of
Texas
National Cancer
Institute
National Centre
for Medical
Genetics, Our
Lady Children’s
Hospital
National Health
Service
(Liverpool
Women’s NHS)
Personalized letter
Customized letter
1
HSO13
Hereditary Breast and Ovarian
Cancer Syndrome
http://www2.mdanderson.org/app/pe/index.cfm?pageN
ame=opendoc&docid=2361
2
HSO14
“Genetic Testing for Breast and
Ovarian Cancer Risk: It’s Your
Choice” (website)
http://www.cancer.gov/cancertopics/genetics/genetictesting-for-breast-and-ovarian-cancer-risk
HSO15
BRCA1 and BRCA2: Cancer
Risk and Genetic Testing
http://www.cancer.gov/cancertopics/factsheet/Risk/BR
CA
1
HSO16
Information for People With
Hereditary Breast Cancer
Pamphlet
4
HSO17
Genetic Testing: Information for
Women Who Have Had Breast
or Ovarian Cancer
Pamphlet
HSO18
Genetic Testing: Information for
Women With a Family History
of Breast or Ovarian Cancer
Who Have Not Had Cancer
Themselves
Pamphlet
National Institute
for Health and
Clinical
Excellence
New South
Wales Health,
Center for
Genetics
Education
The Ohio State
University
Medical Center
& Solove
Research Institute
University of
New South
Wales Hereditary
Cancer Clinic
HSO19
Genetic Testing for Men:
Information for Men From
Families With a Known
Alteration in the BRCA1 Gene
Pamphlet
HSO20
Genetic Testing for Inherited
Pamphlet
Cancer: Information for Families
Where and Altered Cancer Gene
Has Been Found
1
HSO21
Understanding NICE Guidance:
Women With Breast Cancer in
the Family
http://www.nice.org.uk/nicemedia/pdf/CG041PublicIn
foCorrected.pdf
1
HSO22
Understanding Genetic Tests for
Breast and Ovarian Cancer that
Runs in the Family: Information
and Decision Aid
http://www.genetics.edu.au/Information/PublicationsB
rochuresandPamphlets/Genetic%20Tests%20for%20B
reast%20and%20Ovarian%20Cancer%20Decision%20
Aid
1
HSO23
Hereditary Breast and Ovarian
Cancer
http://ckm.osu.edu/sitetool/sites/intmedhumangenetics
public/documents/Brochures/HBOC_fact_sheet.pdf
1
HSO24
Genetic Testing for Cancer Risk: Booklet
A decision Aid for Men With a
Family History of Breast and/or
Ovarian Cancer
University of
1
Sydney Centre
for Genetics
Education & The
Medical
Psychology
Research Unit
University of
1
Utah Health
Sciences Center /
Huntsman Cancer
Institute
Patient Group (PG)
American Cancer 2
Society
Breast Cancer
Action Montreal
Breast Cancer
Network of
Strength
Breast Cancer
HSO25
Understanding Your Breast
Cancer Risk
Information sheet
HSO26
“Breast Cancer” (website)
http://www.huntsmancancer.org/cancerinformation/cancer-types-and-topics/breast-cancer
PG1
Genetic Testing: What You
Need to Know
http://www.cancer.org/acs/groups/cid/documents/webc
ontent/002548-pdf.pdf
PG2
“Learn About Cancer: Breast
Cancer” (website)
http://www.cancer.org/cancer/breastcancer/index
PG3
“Family History of Breast
Cancer” (website)
http://www.y-me.org/risk-detection/common-riskfactors
PG4
“Breast Cancer Gene Testing”
(website)
http://www.y-me.org/information/riskfactors/gene.php
0
2
0
Society of
Canada
BreastCancer.org
3
British Columbia
Cancer Agency
Canadian Breast
Cancer
Foundation
0
Canadian Breast
Cancer Research
Network
Canadian Cancer
Society
0
1
2
PG5
“Getting Genetic Test Results”
(website)
http://www.breastcancer.org/symptoms/testing/genetic
/get_results.jsp
PG6
“Deciding Who in the Family
Should Get Tested” (website)
http://www.breastcancer.org/symptoms/testing/genetic
/who_to_test.jsp
PG7
“What to Do if Your Genetic
Test Results Are Positive”
(website)
http://www.breastcancer.org/symptoms/testing/genetic
/pos_results.jsp
PG8
“Genetic Counselling and
Testing” (website)
http://www.cbcf.org/central/AboutBreastHealth/Early
Detection/AssessingPersonalRisk/Pages/GeneticTestin
gCounselling.aspx
PG9
“Genetic Risk Assessment”
(website)
http://www.cancer.ca/Canadawide/Prevention/Family%20genetics/Genetic%20risk
%20assessment.aspx?sc_lang=en
PG10
“Genetic Changes and Family
Genetics” (website)
http://www.cancer.ca/Canadawide/Prevention/Family%20genetics/Genetice%20cha
nges%20and%20family%20genetics.aspx?sc_lang=en
Cancer BACUP
1
PG11
Understanding Cancer Genetics:
How Cancer Sometimes Runs in
Families
Booklet
Corporation de
recherche et
d’action sur les
maladies
héréditaires
Cure Today
0
1
PG12
All in the Family
http://www.curetoday.com/index.cfm/fuseaction/journ
ey.showArticle/id/9/enableStageSubMenu/4/article_id/
206
Europa Donna
1
PG13
Histoire familiale et cancer du
sein
http://www.europadonna.fr/documents_pdf/genetique_
2008.pdf
First Nations
Breast Cancer
Society
Fondation du
Cancer du Sein
du Québec
Groupe d’étude
en oncologie du
Québec
Hereditary Breast
and Ovarian
Cancer Society of
Alberta
0
PG14
Hereditary Breast and Ovarian
Cancer Society of Alberta
(“About Us”)
Pamphlet
0
0
4
Kelly Shires
Breast Cancer
Foundation
Susan G. Komen
Foundation
Willow
PG15
Bad Luck of Bad Genes?
Pamphlet
PG16
Facts for Health Professionals
about Hereditary Breast and
Ovarian Cancer (HBOC)
Factsheet
PG17
Understanding Hereditary Breast Booklet
and Ovarian Cancer
PG18
Family History of Breast,
Ovarian or Prostate Cancer
http://ww5.komen.org/Content.aspx?id=5282&terms=
Family%20History%20of%20Breast%2c%20Ovarian
%20or%20Prostate%20Cancer
PG19
Risk Factors and Prevention
http://ww5.komen.org/Content.aspx?id=5248&terms=
Risk%20Factors%20and%20Prevention
PG20
Informing Adult Family
Members about Your BRCA1 or
BRCA2 Genetic Test Results
http://www.willow.org/assets/u/Informing%20Family
%20Members.pdf
PG21
Genetic Counselling for
Hereditary Breast and Ovarian
Cancer
http://www.willow.org/assets/u/Genetic%20Counsellin
g.pdf
PG22
Genetic Testing for Hereditary
http://www.willow.org/assets/u/Genetic%20Testing.pd
0
2
4
PG23
Breast and Ovarian Cancer
f
Letter informing family
members about your genetic test
results
http://www.inourgenes.ca/assets/u/Family%20member
%20letter.pdf