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Original article
A national study of the provision of oncology sperm
banking services among Canadian fertility clinics
S. YEE, MSW, SOCIAL WORKER, Center for Fertility and Reproductive Health, Mount Sinai Hospital, Toronto, Ontario,
and PHD STUDENT, Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Ontario, W. BUCKETT,
MB, CHB, MD, STAFF PHYSICIAN, McGill University Reproductive Centre, Royal Victoria Hospital, Montreal, Québec, and
ASSOCIATE PROFESSOR, McGill University, Montreal, Québec, S. CAMPBELL, PHD, SENIOR SCIENTIST, PROPEL Centre for
Population Health Impact, Waterloo, Ontario, R.A. YANOFSKY, MD, CancerCare Manitoba, Winnipeg, Manitoba,
and ASSOCIATE PROFESSOR OF PEDIATRICS, Section of Pediatric Hematology/Oncology, Department of Pediatrics and
Child Health, University of Manitoba, Winnipeg, Manitoba, & R.D. BARR, MB, CHB, MD, PROFESSOR OF PEDIATRICS,
PATHOLOGY AND MEDICINE AT MCMASTER UNIVERSITY, Health Sciences Centre, McMaster University, Hamilton, Ontario,
Canada
YEE S., BUCKETT W., CAMPBELL S., YANOFSKY R.A. & BARR R.D. (2013) European Journal of Cancer Care
22, 440–449
A national study of the provision of oncology sperm banking services among Canadian fertility clinics
The purpose of this study was to survey the current state of oncology sperm banking services provided by
fertility clinics across Canada. A total of 78 Canadian fertility facilities were invited to complete a questionnaire related to the availability, accessibility, affordability and utilisation of sperm banking services for cancer
patients. The total response rate was 59%, with 20 (69%) in vitro fertilisation clinics and 26 (53%) other
fertility centres returning the survey. A total of 24 responding facilities accepted oncology sperm banking
referrals. The time frame to book the first banking appointment for 19 (79%) facilities was within 2 days.
Inconsistent practice was found regarding the consent process for cancer patients who are of minority age.
Eight (33%) facilities did not provide any subsidy and charged a standard banking fee regardless of patients’
financial situations. Overall, the utilisation of oncology sperm banking services was low despite its availability
and established efficacy, suggesting that Canadian cancer patients are notably underserved. The study has
highlighted some important issues for further consideration in improving access to sperm banking services for
cancer patients, especially for adolescents. Better collaboration between oncology and reproductive medicine
to target healthcare providers would help to improve sperm banking rates.
Keywords: fertility preservation, oncofertility, male cancer patients, sperm banking.
INTRODUCTION
Each year over 2000 adolescents and young adults (AYA)
between 15 and 29 years of age are diagnosed with cancer in
Canada (Canadian Cancer Society 2009). The incidence of
Correspondence address: Ronald D. Barr, Health Sciences Centre,
McMaster University, Room 3N27, 1200 Main Street West, Hamilton,
Ontario, Canada L8S 4J9 (e-mail: [email protected]).
Accepted 18 November 2012
DOI: 10.1111/ecc.12045
European Journal of Cancer Care, 2013, 22, 440–449
© 2013 John Wiley & Sons Ltd
cancer is almost three times higher in AYA than in children
under aged 15 (Carpentier & Fortenberry 2010). Worldwide,
including in Canada, cancer incidence is slightly higher
in men than women (Bleyer et al. 2006; Carpentier &
Fortenberry 2010; Canadian Cancer Society 2011). Early
detection of disease through improved diagnostic techniques and rapid advances in cancer treatments have gradually decreased the mortality rates in recent years, and
increased the overall prospects for survival. With 5-year
survival rates of over 80% in childhood and youth cancers
(Canadian Cancer Society 2009, 2011), many AYA will
Oncology sperm banking in Canada
eventually consider parenthood. Unfortunately, cytotoxic
cancer treatments are potentially sterilising, and may
have adverse effects on spermatogenesis and sperm DNA
integrity (Lee et al. 2006). Individual susceptibility to the
deleterious effects of cancer treatments on fertility varies,
and some cancer survivors may never regain reproductive potential. At present, cryopreservation of sperm from
ejaculated samples produced prior to commencing cancer
treatment is the most effective way to preserve future
fertility for male cancer patients.
The AYA are a diverse group with varying levels of
developmental maturity and independence. For most adolescents and some young adults, cancer diagnosis may
occur at a time when they are not actively thinking about
parenthood, and therefore fertility preservation (FP) may
feel unimportant when survival takes immediate priority
(Chapple et al. 2007; Crawshaw et al. 2008). Canadian
clinical practice guidelines pertaining to issues surrounding fertility and FP related to cancer have not yet been
developed. On the other hand, oncology medical societies
from other countries have published guidelines that
emphasise the role of oncologists in informing cancer
patients about the importance of sperm banking prior to
cancer therapy (British Fertility Society 2003; Lee et al.
2006; Clinical Oncological Society of Australia 2011).
Physician recommendations have been found to be a
crucial factor influencing patients’ decision to bank sperm
(Saito et al. 2005; Achille et al. 2006; Yee et al. 2012c).
Sperm banking referrals are generally made directly by
oncology teams, or in conjunction with patients and
families by providing them with banking information.
Active involvement of families and encouragement from
healthcare providers are found to be helpful in particular to patients who are indecisive (Achille et al. 2006;
Crawshaw et al. 2008).
A body of research into the experiences of cancer
patients and survivors has found very strong support
for sperm banking to preserve fertility (Saito et al. 2005;
Achille et al. 2006; Chapple et al. 2007; Crawshaw et al.
2008; Yee et al. 2012c). The majority are able to complete
the banking process if they are informed about the fertility
risks and are given the opportunity to bank (Edge et al.
2006; Crawshaw et al. 2008). This suggests that not only
do cancer patients have positive attitudes towards sperm
banking to safeguard their fertility potential, but also that
successful banking rates are high if they are able to navigate through the healthcare system to bank sperm (Saito
et al. 2005; Achille et al. 2006).
Nevertheless, sperm banking service utilisation rates
among cancer groups are low considering cancer incidence. Barriers to accessing the banking services, as iden© 2013 John Wiley & Sons Ltd
tified by research literature, are many, including inflexible
clinic hours, lack of convenient banking facilities, lack
of financial subsidies of cryopreservation fees, lack of
adolescent-focused approaches and age-appropriate educational materials, urgency to start cancer therapy, and the
requirement of viral screening in order to bank sperm
(Saito et al. 2005; Achille et al. 2006; Edge et al. 2006;
Chapple et al. 2007; Crawshaw et al. 2008; Klosky et al.
2009; Chong et al. 2010). In Canada, sperm banking services are predominantly provided by fertility clinics that
have an andrology laboratory. Prior Canadian research is
limited to the perspectives of oncology healthcare providers (Achille et al. 2006; Nagel & Neal 2008; Chong et al.
2010; Yee et al. 2012b), cancer patients and survivors
(Achille et al. 2006; Yee et al. 2012c), and retrospective
chart review of single site studies (Neal et al. 2007; Selk
et al. 2009). The purpose of this study was to gain a better
understanding of the current state of oncology FP services
provided by fertility clinics in Canada. This paper reports
the findings regarding oncology sperm banking. Data
on FP service provision for female cancer patients are
reported separately (Yee et al. 2012a).
The project was commissioned by the Canadian Task
Force on Adolescents and Young Adults with Cancer – a
task force that is funded by the Canadian Partnership
Against Cancer and works in collaboration with C17, the
consortium of the directors of all paediatric oncology
centres across Canada. The task force’s mission is to
ensure that AYA cancer patients and AYA survivors of
cancer have prompt and equitable access to the best care
(Barr et al. 2011).
METHODS
Institutional ethics approval was obtained from the
Research Ethics Board of McMaster University and Hamilton Health Sciences. An Internet search was conducted in
March 2011 using multiple websites1 that had a directory
of Canadian fertility facilities to generate a participant list.
A total of 78 facilities were found with 29 in vitro fertilisation (IVF) clinics, 47 fertility centres (without onsite IVF)
and two Canadian donor sperm distributors. Table 1 summarises the provincial distribution of new estimated male
cancer cases in 2011 (Canadian Cancer Society 2011) and
the location of 78 fertility facilities across Canada.
1
The following Canadian websites were used to generate a participant
list: (1) Infertility Awareness Association of Canada (http://www.iaac.ca);
(2) Infertility Network (http://www.infertilitynetwork.org); (3) Family
Helper (http://www.familyhelper.net); (4) Canadian Fertility and Andrology Society (http://www.cfas.ca); (5) Fertilityclinic.ca (http://www.
fertilityclinics.ca); (6) IVF.ca (http://www.ivf.ca); (7) Fertile Future
(fertilefuture.ca); and (8) Yellow Pages (http://www.yellowpages.ca)
441
YEE ET AL.
Among the 29 IVF clinics, all except one had a website. However, only nine IVF clinics provided web-based
FP information for cancer patients. Among them, two
provided non-gender specific oncology FP information and
seven provided specific oncology sperm banking information. For the other 49 facilities, 18 had a website to provide
information about their clinical services; the remainder
only had the contact information available in the Internet.
Among the 18 facilities with a website, one had nongender specific FP information, and two provided specific
oncology sperm banking information. The remaining 15
facilities did not provide any information on FP for cancer
patients.
A self-administrated questionnaire, with 18 closedended and four open-ended questions, was developed based
on four substantial areas related to FP service provision:
availability, accessibility, affordability and utilisation of
services (Fig. 1). Questions related to the consent process
for patients who are of minority age, perceived obstacles to
providing optimal FP services and recommendations to
improve patient access to services were also included.
The first research package was mailed in mid-August
2011 to the medical directors or clinic managers to invite
their participation in the study. The package contained a
cover letter, a FP survey covering both male and female
cancer patients, a ‘decline to participate’ form and a
stamped returned envelope. Checkboxes were provided for
clinics to indicate whether their facility offered oncology
FP services to men and women. A second mailing to nonrespondents was sent 6 weeks later, followed by an email
Table 1. Provincial distribution of new estimated male cancer cases in 2011 and the location of fertility facilities across Canada
Canada (total)
Ontario
Quebec
British Columbia
Alberta
Nova Scotia
Manitoba
Saskatchewan
New Brunswick
Newfoundland and Labrador
Prince Edward Island
Male
% of cancer
distribution
IVF (in vitro
fertilisation)
clinics†
Fertility centres
and sperm
distributors†
Total facilities
(% distribution)
93 000*
34 500
24 000
11 900
8 600
3 300
3 100
2 800
2 700
1 500
500
100*
37.1
25.8
12.8
9.3
3.5
3.3
3.0
2.9
1.6
0.5
29
13
6
4
2
1
1
1
1
0
0
49
29
10
2
3
0
0
0
1
3
1
78 (100)
42 (53.8)
16 (20.5)
6 (7.7)
5 (6.4)
1 (1.3)
1 (1.3)
1 (1.3)
2 (2.6)
3 (3.8)
1 (1.3)
*May not sum to column total due to rounding.
†Number of clinics as of March 2011.
Government funding &
financial subsidy
Government legislations &
best practice guidelines
Availability of services and resources
Finance
Families
Female
AYA
Options
Cancer
care
Fertility
needs
Health care
providers
Male
AYA
Facilities
Affordability of services
Utilisation of services
Time
Accessibility of services and resources
Oncology system
442
Reproductive
medicine system
Figure 1. Addressing fertility needs in
adolescents and young adults (AYA) with
cancer.
© 2013 John Wiley & Sons Ltd
Oncology sperm banking in Canada
Table 2. Male fertility preservation survey responses
Total participants
Undelivered mail*
Returned mail
Response rate
Decline participation
Do not provide oncology sperm banking service
Provide oncology sperm banking service
IVF (in vitro
fertilisation) clinics
Fertility centres &
sperm distributors
Total
29
0
20
69% (20/29)
49
8
26
53% (26/49)
78
8
46
59% (46/78)
20 respondents
26 respondents
46 respondents
1
2
17
3
16
7
4
18
24
*Mail was returned by post office and further address information could not be located on the Internet.
(where available) after a further 6 weeks. A final phone call
to remaining non-respondents was made 6 weeks after the
email reminder.
RESULTS
The total response rate was 59%, with 69% for IVF clinics
and 53% for other fertility facilities. Table 2 summarises
the survey responses and the provision of oncology sperm
banking services indicated by respondents. Surveys from
24 facilities which provide oncology sperm banking services were available for data analysis, 17 from IVF clinics
and seven from fertility facilities.
than the clinics in Québec, the initial banking fee ranged
from no cost to $CAN500 (mean = $CAN304, SD =
$CAN117, median = $CAN300), and subsequent banking
fees ranged from no cost to $CAN350 (mean = $CAN173,
SD = $CAN91, median = $CAN175). The annual storage
fee after the first year for all clinics ranged from $CAN100
to $CAN350 (mean = $CAN235, SD = $CAN55, median =
$CAN240). Ten facilities (42%) provided financial subsidy
through charitable organisations. In addition to the charitable subsidy, 13 facilities (54%) offered a fee reduction
or case-by-case assessment for patients in financial need.
Only eight facilities (33%) did not provide any subsidy
at all, and charged a standard banking fee regardless of
patients’ financial situations.
Accessibility of services
In addition to regular operating hours during weekdays, 13
facilities (54%) provided the banking services on both
Saturday and Sunday mornings, and one facility operated
on Saturday mornings only. None of them opened in evenings. A few respondents indicated that they were willing
to extend the regular operating hours to accommodate
emergency oncology sperm banking if needed. A medical
referral was required only in four facilities (17%), and the
remaining (83%) accepted self-referral. The time frame to
book the first banking appointment was quite short. Seven
facilities (29%) arranged same day appointment, 12 (50%)
required 1–2 days, and four (17%) required 2–4 days. Only
one facility required more than a week to arrange the first
banking visit. Eight clinics (33%) allowed the patients
to produce sperm samples off site by providing a sperm
banking kit.
Affordability of services
The fee schedules and the availability of financial subsidies are summarised in Table 3. Sperm banking was
offered free of charge for clinics located in Québec. Other
© 2013 John Wiley & Sons Ltd
Utilisation of services
Three facilities (13%) indicated that they rarely received
referrals. Eight facilities (33%) only received 1–2 referrals
per month, eight (33.3%) received 3–4 referrals, three
(13%) received 5–6; only two facilities (8%) received a
high referral volume of 14–18 per month. In terms of
providing follow-up care after banking, nine facilities
(38%) had a standard process of providing a verbal and/or
written report of the sperm sample quality to cancer
patients and/or their referrers. Four facilities (17%) did
not have a routine follow-up process in place. Ten (42%)
provided follow-up only upon request. Only one facility
arranged a face-to-face appointment with cancer patients
following the banking.
Medical oncologists and urologists were the most
frequent referring physicians. Referrals from paediatric
oncologists, radiation and surgical oncologists, and family
doctors were very infrequent. Although 83% of facilities
accepted self-referral, almost all indicated that referrals
from patients and families were either ‘never’ or ‘infrequent’. Most referrals were sent directly from physicians
in cancer centres and teaching hospitals.
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YEE ET AL.
Table 3. Oncology sperm banking and storage fees, and the availability of financial subsidies
Respondents
First
banking
fee
Subsequent
sperm
banking fee
Annual
storage
fee*
Financial subsidy
through charitable
organisations
Additional
financial subsidy
by clinic
#1
#2
#3
#4
#5
#6
#7
#8
#9
#10
#11
#12
#13
#14
#15
#16
#17
#18
#19
#20
#21
#22
#23
#24
$450
$200
$175
$345
$500
$175
$300
$500
$300
$350
$300
$350
$0
$0
$400
$350
N/A
$0
$250
N/A
$300
$225
$300
$300
$200
$200
$175
$200
$0
$175
$150
$0
$0
$350
$150
$150
$0
$0
$300
$200
N/A
$175
$250
N/A
$150
$225
$150
$250
$200
$200
$200
$250
$200
$240
N/A†
$300
$300
$200
$240
$275
N/A
$100
$350
$200
N/A
$300
$250
N/A
$250
$200
$200
$250
Yes
Yes
Yes
No
No
Yes
Yes
Yes
No
No
Yes
Yes
N/A
N/A
No
Yes
No
No
Yes
No
No
No
No
No
Case by case
No
No
No
No
Case by case
Flat rate reduction
Case by case
Case by case
No
Case by case
No
N/A
N/A
Case by case
No
Case by case
Case by case
Case by case
Case by case
N/A
No
Case by case
Case by case
*Annual storage fee is generally applicable after the first year.
†N/A – respondents did not provide the information in the returned survey.
Availability of patient resources
Facilities were asked to indicate if they provided any
oncology sperm banking information to referrers and
cancer patients, such as patient education brochures and
sperm banking instructions. Ten facilities (42%) indicated
that they had clinic-specific banking information in
printed and/or web-based formats. Other than that, only
nine utilised both the FP brochures published by Assisted
Human Reproduction Canada (AHRC)2 and Fertile Future3
for patient education, despite these brochures being available at no cost to clinics; three others used either the
AHRC or Fertile Future brochure. Thirteen facilities had
provided training to oncology healthcare providers in
the past on sperm banking in various formats, such as
grand rounds, seminars and conference presentations. One
facility commented that, ‘awareness is key; after giving
2
Assisted Human Reproduction Canada is a federal agency established by
Health Canada in 2007. The educational brochure, ‘Cancer and Preserving
Your Fertility: A Guide for Patients’ is available at http://www.ahrc-pac.
gc.ca/v2/pubs/alt-formats/pdf/pubs/pubs/brochures/cancer-cancer-eng.pdf
3
Fertile Future is a Canadian non-profit organisation with a mandate of
providing information and resources related to fertility preservation options
to cancer patients/survivors. The educational brochure, ‘Cancer and Fertility: A Guide to Young Adults’ is available at http://fertilefuture.ca/wpcontent/uploads/2011/06/Fertilefuture_brochure_v9.pdf
444
a couple of grand rounds presentations, our referrals
increased by 70%. The challenge is to keep sending out
the message to capture those new to the field. It needs to
be an ongoing process’.
Consent process
Facilities were asked to indicate the consent process for
cancer patients who are of minority age but are able to
produce sperm samples for banking purposes. A wide variation in practice was found even among clinics located in
the same province. Less than half (46%) used a consent
process similar to that for adults, eight (33%) required
assent by the adolescents but written consent from
their parents/legal guardians, and five (21%) required only
written consent by parents/legal guardians.
Barriers to accessing services
Participants were asked to rank a list of 10 questions
related to the barriers for male cancer patients accessing
sperm banking services. The top three barriers reported
by responding facilities were (1) inadequate patient
awareness of the negative impact of cancer treatment on
© 2013 John Wiley & Sons Ltd
Oncology sperm banking in Canada
fertility; (2) inadequate patient awareness of the importance of sperm banking prior to cancer treatment; and (3)
lack of support from oncology healthcare providers for
cancer patients to consider oncology sperm banking. Most
participating facilities did not perceive the location of
banking facilities and the fees to be major barriers to
sperm banking. Referrals not received in a timely manner
were also not identified as a barrier since most facilities
were able to arrange banking appointments very rapidly.
Some facilities stated that oncologists were not proactive
in referring cancer patients. One commented that ‘we
have little support from oncology, or else we would see
more patients’.
DISCUSSION
Utilisation of services
Canadian studies found that only 18% (146/821) of newly
diagnosed AYA banked sperm in a 10-year period in a single
centre (Neal et al. 2007); and 19% (50/262) of adolescents
who were treated over a 2-year period banked sperm
successfully in 16 surveyed paediatric oncology centres
(Chong et al. 2010). Similar to these findings, our data
suggest that sperm banking services are severely underutilised by Canadian cancer patients based on the referral
volume reported by participating fertility facilities. Plausible explanations for underutilisation of banking services,
based on the findings in this study are lack of awareness of
the threat posed to fertility from cancer and its treatment,
lack of awareness of FP options for cancer patients, lack of
knowledge of the location of sperm banking facilities, and
lack of awareness that banking subsidies are available to
assist patients in financial need.
The vast majority of facilities provided sperm banking services on the weekends. Time frame to arrange the
banking appointments was quite fast. Some clinics indicated that they were willing to extend the operating hours
to accommodate emergency banking appointments if
needed. Despite that, only 24 of the 78 surveyed facilities
are known to provide oncology sperm banking services.
Knowing where an oncology sperm banking facility is
located and having rapid access to service are vital to
successful sperm banking. A national database of oncology
sperm banking facilities with information on their location, contact information, hours of operation, fees schedule, available subsidies, and referral procedure, would help
to reduce accessibility barriers.
Dealing with the devastating news of having cancer is
in itself a traumatic experience. Patients and families are
already overwhelmed and stressed when accessing sperm
banking services. In addition, the use of masturbation
© 2013 John Wiley & Sons Ltd
to produce a sample may be problematic for some who
have moral, ethical, religious or cultural reservations
(Achille et al. 2006). The emotional context of oncology
sperm banking and the use of masturbation may make
ejaculation difficult. A survey of 55 cancer patients
between ages 13 and 21 found that those who were
unable to bank sperm were significantly younger with an
average age of 15.3 years, had higher levels of anxiety
at diagnosis, had less understanding of the sperm banking process, and more difficulty in talking about fertility
(Edge et al. 2006). Much anxiety and stress could be
avoided if cancer patients are provided with more
detailed information relating to the practical aspects of
the banking process (Achille et al. 2006; Nagel & Neal
2008; Murphy et al. 2012). The availability of cryopreservation kits to facilitate off-site sperm banking would help
to reduce the stress of attending a fertility clinic for some
cancer patients.
Accessibility of patient resources
We have found that some banking facilities did not
provide oncology FP educational materials, including the
free FP brochures published by AHRC and Fertile Future,
to referrers and patients. A recent national study of 16
Canadian paediatric cancer centres found that sperm
banking pamphlets were available in nine institutions
only. All except one used adult-focused sperm banking
pamphlets. Only one facility had developed a ‘plain language’ educational brochure on oncology sperm banking
for AYA (Chong et al. 2010). The lack of educational
materials, in particular adolescent- and parent-focused
resources, may lead to misconceptions about the banking
process. Processing new medical information in times
of stress, and navigating through the healthcare system
are often very challenging for patients who are newly
diagnosed with cancer (Zebrack & Walsh-Burke 2004;
Zebrack et al. 2006). Patients and their families can be
their self-advocates for FP services when resources such
as patient brochures are available and easily accessible.
A Canadian paediatric multidisciplinary oncology team
developed a ‘plain language’ sperm banking brochure for
adolescents using age-appropriate health literacy (Nagel
et al. 2008). Another USA-based team used social marketing techniques by involving patients and families
to develop FP brochures for male and female paediatric
cancer patients to remove barriers to patient education
(Murphy et al. 2012). As Internet has become a major
medium for AYA to search for information, FP information should be made available online to increase its
accessibility. There is an urgent need for clinics to update
445
YEE ET AL.
their websites on service provision for better communication with the public.
Affordability of services
In Canada, public funding covers cancer care but not
assisted reproductive services, except in the province of
Québec (Beauchamp 2010). A Canadian study identified
financial cost as a main reason for those who chose not to
bank sperm (Achille et al. 2006). Cancer patients with low
socio-economic status are less likely to bank sperm when
the fees are prohibitive (Klosky et al. 2009). Most young
adults are at the stage of completing higher education and
starting a new career, and may not have a well-established
financial base. Sperm banking is used to mitigate the risks
of infertility as a possible consequence of cancer treatment by preserving future reproductive options. The
unique medical reason for cancer patients to preserve
fertility is not addressed in the Canadian public healthcare
system. There is a strong argument to extend provincial
health funding to cover FP services so that all cancer
patients would have the opportunity to bank sperm
regardless of their socio-economic status.
Ethical and legal considerations
At present, all sperm banking services are provided by
fertility clinics when their clientele are predominately
couples seeking assisted reproductive services. The therapeutic benefits of providing pornographic materials to
assist the banking process among adult groups are well
recognised. However, the psychological implications
of exposing cancer patients who are of minority age to
pornographic materials for banking purposes are ethically
and morally controversial. Most Canadian sperm banking
facilities allow adolescents to use adult pornographic
materials for sperm banking (Chong et al. 2010). Studies
on the therapeutic use of pornographic materials in AYA
are extremely limited. A survey of 94 male teenage cancer
survivors found that almost three quarters of them would
welcome access to soft pornographic materials either provided by the banking facilities or supplied by themselves
to assist the banking process (Crawshaw et al. 2007).
There is a need to develop guidelines on the use of pornographic materials for adolescents during the sperm collection process regarding the balance between therapeutic
use and potentially harmful exposure.
Inconsistent practice is found regarding the process of
obtaining written consent from adolescents, and there is
intra-provincial variation in whether parental consent is
required. This raises legal concerns, especially in circum446
stances in which an adolescent decides not to involve
his parents in the sperm banking decision but parental
consent is required for banking. Problems may arise if his
right to autonomy is in conflict with his parents’ wishes of
what they think is best for their son, and if they would
override their son’s wishes. The supportive role of parents
in helping their children with cancer is indisputable.
However, studies have identified that parental accompaniment to banking facilities is an embarrassing experience
for some adolescents (Edge et al. 2006; Chapple et al.
2007). Parental accompaniment is helpful only if it is
provided in accordance with the patients’ wishes (Achille
et al. 2006; Crawshaw et al. 2008).
In Canada, conditions under which sperm is collected,
stored, transported and used are regulated by Health Canada’s semen regulations (Health Canada 2004) and the
Assisted Human Reproduction Act (Assisted Human
Reproduction Canada 2010). Valid consent should be based
on autonomy, competence, an understanding of information presented, and an appreciation of the nature and consequences of the proposed treatment to allow informed
decision (Coulson et al. 2001). The chronological age of a
minor is less relevant than the concept of maturity in
determining the competency to provide consent in Canada
(Evans & Henderson 2006). Clinics need to clarify their
consent process if a substituted consent from parents/legal
guardians is required for an under-aged minor to bank
sperm. This clarification is essential because of the legal
implications in the event of death, such as the ownership
of and the consent to use banked sperm for posthumous
reproduction (Bahadur et al. 2001; Green & Crawshaw
2006; Assisted Human Reproduction Canada 2010; Elster
2011). The development of provincial practice guidelines
by medical societies would help to clarify the appropriate
age for consent to standardise practice. The use of ageappropriate consent forms and educational materials for
adolescents also warrants consideration. Furthermore, disposition options stated in the consent form, including an
advanced directive in the event of death or mental incapacitation, should be explained with sensitivity to cancer
patients by emphasising that it is a routine question for all
patients. Cancer patients should be made aware that they
have the right to contact the banking facility at any time to
revisit or revoke their consent condition (Assisted Human
Reproduction Canada 2010; Elster 2011).
Training and education
Studies report that some healthcare providers feel
unequipped or uncomfortable to discuss sperm banking
with cancer patients if no resources and training are
© 2013 John Wiley & Sons Ltd
Oncology sperm banking in Canada
available to assist them (Reebals et al. 2006; Quinn et al.
2007, 2009; Vadaparampil et al. 2007; King et al. 2008a,b;
Quinn & Vadaparampil 2009; Peddie et al. 2011). Canadian physicians are found to have inconsistent knowledge
with regards to cancer-related fertility matters despite
their positive attitudes towards preserving fertility for
cancer patients (Yee et al. 2012b). There is also a considerable uncertainty among Canadian healthcare providers
over the most appropriate way of introducing the topic to
adolescents and how to involve their parents in discussion
(Achille et al. 2006; Nagel & Neal 2008). A recent Canadian survey (Chong et al. 2010) found that no paediatric
facilities had provided specific training to staff on oncology sperm banking. Since at least half of the responding
clinics in our study stated that they had been involved in
providing training in the past, perhaps better collaboration
between the fields of oncology and reproductive medicine
in organising training modules to target healthcare providers would help to establish better working relationships
and more robust referral protocols to improve accessibility
(Quinn et al. 2011).
This study has several limitations when interpreting
the findings of sperm banking service provision to male
cancer patients. The exact number of facilities providing
oncology sperm banking services is unknown, due to
undelivered surveys and non-response. As with all such
surveys, clinics that have more favourable attitudes
towards providing services to cancer patients and have
more resources allocated to program development may
have been more willing to participate in the study. We are
unable to compare the differences between respondents
and non-respondents. Finally, although it is commonly
agreed that adolescence encompasses the age range from
15 to 19 years, the upper age limit for young adults varies
between countries, with some set at age 24 while others
use age 29 or even 39 (Barr 2011). This poses a challenge
when comparing our findings with research conducted
in other countries that have different upper age limits.
Nonetheless, the findings contribute to the limited data
pertaining to the provision of oncology sperm banking
services in Canada.
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© 2013 John Wiley & Sons Ltd
CONCLUSION
The study has highlighted some important issues for
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