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Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- cancer patients who contributed leftover
- to analyse the attitudes of individuals who
tissue to the Indiana University Cancer
Helft et al
USA
Patients
Questionnaire
donated tissue samples to the HBM
Center Tissue Bank
(2007)
repositories
Response rate: 273/361
- patients at three different clinics, who
Semi-structured
had been approached to participate in a
- to examine patients' perspectives on the use
and structured
large epidemiological study involving
of anonymous and identifiable clinical samples
interviews
storing blood samples
for genetic research
Hull et al
USA
Patients
(2008)
Response rate: 1193/1395
- to determine the general attitudes towards
- Patients and their relatives at six hospital
genetic research and participation in biobanks
Kerath et al
USA
Patients
Questionnaire
centers in the NSLIJ system
and which factors would predict a positive
(2013)
n=1041
view of such research
1
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- women aged 21–89 years presenting to
- to characterize patients' willingness to donate
Lee et al
USA
Patients
Questionnaire
our facilities for screening mammogram
a biospecimen for future research
(2012)
n= 4217
- leukemia patients undergoing treatment
Master et al
Canada
Patients
in clinics in Ontario, Canada
- to explore patients' perspectives on ethical
Initial survey response rate 100/156;
and legal issues of biobanking
Questionnaire
(2013)
Follow up survey 45/72
- participants were adult patients (n=205),
parents/guardians of pediatric patients
- to assess the effect of different consent types
(n=103), and family members acting as
McGuire et al
USA
(2011)
Patients
Mixed method
on research participation and data sharing
matched case controls (n=28) who were
decisions
recruited to one of six ongoing genomic
studies
2
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- cancer patients at two different hospitals
- to compare the views of two groups of
who were given the option of tissue
Pentz et al
USA
Patients
Questionnaire
patients who were given the option of tissue
banking
(2006)
banking
Response rate 315/452
- to obtain consent from breast cancer
- patients surgically treated for breast
survivors to use residual tissue for a genetic
cancer between 1995 and 1997 in the
Vermeulen et
Netherland
al (2009)
Patients
Questionnaire
study and to investigate which consent
Netherlands Cancer Institute
regimen patients prefer for biobank-based
Response rate 114/132
research
3
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- to determine which consent procedures
patients prefer for future biobank-based
Vermeulen et
Netherland
Patients
Questionnaire
- patients, aged <75 years, with surgery
medical research, the percentage of patients
for breast or colorectal cancer in 2007
who choose not to provide consent for
Response rate 76/102
biobank-based research and to find out the
al (2009)
reasons for denying participation in biobankbased research
- to explore the research participants'
- general Dutch population (n=1,163) and
preferences on receiving biobanks' genetic
patients with asthma, rhinitis,
research results, and their views about
and thrombosis (n=515)
researcher's duties to communicate research
Meulenkamp
Netherland
Patients / Public
Questionnaire
et al (2010)
results
Robinson
(2013)
USA
Patients / Public
Questionnaire
- participants being recruited to
- to analyse how participants’ understood
genomic research studies
genomic research and how this influences their
n = 229
decision
4
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- to examine perceptions of the importance of
recommended criteria when applied to
genetic/genomic IFs by medical genetic
Brandt
USA
Professionals
Interview
- medical genetics specialists; n=103
specialists,
(2013)
genomic researchers, and Institutional Review
Board (IRB)chairs perceive
- to explore the views about the obligation to
- Dutch investigators involved in biobank
communicate research results, opinion about
research
ownership of samples, privacy, therapeutic
Response rate 80/278
relationship, costs and implications for
Meulenkamp
Netherland
Professionals
Questionnaire
et al (2012)
participants
- Physicians involved in treatment of
- to determine interest in a genetic counseling
Wassermann et
USA
Professionals
Questionnaire
patients with history of a cancer disease
program for heritable cancers
al 2000
Response rate: 92/700
5
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Canada
Public
Questionnaire
Caulfield et al.
(2012)
Study setting and Sample size
Aim of the Study
- Alberta residents
- to analyze Alberta residents perceptions of
Response rate; 1201/8724
biobank-based research
- randomized sample of the population in
- to understand of public perspectives on the
Hoeyer et al
Sweden
Public
Questionnaire
the age group 18 – 85 in Vasterbotten
use of tissue for research
(2004)
County, Sweden Response rate:589/1000
- to analyze public willingness to participate in
- U.S. adults
Kaufman et al
USA
(2009)
Public
Questionnaire
biobank-based research, their privacy
Response rate 4659/7987
concerns, informed consent and data sharing
6
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
Aim of the Study
- to analyse general public perceptions of
KettisLindblad et al
Sweden
Public
Questionnaire
(2005)
- r andom sample of the general public in
biobank-based research, to assess the public's
Sweden, 18–80 years of age
willingness for tissue donation and to estimate
Response rate 2928/6000
factors associated with the willingness to
donate samples
KettisLindblad et al
Sweden
Public
Questionnaire
(2007)
- random sample of the general public in
- to examine public's preferences for
Sweden, 18–80 years of age
information and consent procedures for new
Response rate 2928/6000
research studies with stored tissue samples
- general public in Sweden, 18–75 years
Nilstun et al
Sweden
Public
Questionnaire
of age
- to investigate the attitudes of the general
public to biobank research and to discuss the
findings in the light of some well-known
(2006)
Response rate: 926/2000
ethical principles.
7
Quantitative empirical studies
Study/Year
Location
Interviewed
Method
Study setting and Sample size
- public in medium-sized Eastern-Canada
Pullman et al
Canada
Public
Questionnaire
city
Aim of the Study
- to assess the public's perception of biobank
research and their concerns for privacy and
confidentiality and their impact on
(2012)
Response rate: 330/2737
participation willingness
Supplementary Table 2: Data extraction and content analysis – Quantitative studies
The extracted data included author, year of publication, the group which was interviewed, method, study setting and sample size and aim of the
study; studies were categorized according to the group of participants: patients and relatives, public and professionals involved in research.
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