Gottweis
et al. 2011
(45) |
Narrative review of
23 quantitative and
qualitative studies of
public perceptions of
biobanks, 2003–2010
(international) |
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■
Overall, existing studies on public perception of biobanks tend to concentrate on certain regions. They differ with respect to methodological conceptualization and research design, are typically comparable only to a limited extent, and often present contradictory data.
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■
Apart from local variations in biobank perception, people clearly differentiate between biobanks based on their type and purpose.
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■
The link between knowledge about biobanks and preferred consent forms and readiness to participate in biobank studies is clearly an issue of great importance.
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■
People want to know about the entity to which they are entrusting their data.
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■
Most studies to date had suggested a generally low level of knowledge on biobanks and genetic research by different publics.
|
“We argue that the existing data originate
in a relatively few regions, among them
Northern Europe, the United Kingdom,
and in certain U.S. states and are often
based on survey research with small
samples and short questionnaires.
Combined usage of qualitative and
quantitative methodology in studies is
still rare though of great importance in
order to investigate distributions of public
opinion and also to be able to explain
these patterns. Many important questions
in the relationship between publics and
biobanks are unexplored, or the existing
data are inconsistent.” (p. 433) |
Lipworth
et al. 2011
(88) |
Narrative review of
36 qualitative studies
of lay perceptions of
biobanking,
2002–2009
(international) |
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■
Any “sociology of biobanking” would need to be nuanced and draw on a variety of social theories in order to account for the donor population, the type of tissue being donated, and the context of the donation.
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■
For the most part, people are not a priori against commercially funded research; few people feel a strong sense of ownership of their tissue; and where an expectation of reciprocity does emerge, it appears to be centered on social exchange rather than on any expectation of direct personal reward.
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■
There is broad agreement that consent is not a panacea. Although potential donors should always be asked for their permission in a manner that is sensitive to specific vulnerabilities and desires, it is also generally agreed that people should not be forced to absorb large amounts of technical information or to give recurrent, project-specific consent unless they wish to do so.
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■
There is also general agreement that rigorous oversight of biobanks is crucial and that this should combine public control with oversight by institutional ethical and scientific review committees.
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■
There is general agreement that it is important to take seriously the results of research, which have consistently revealed high levels of trust, a desire for or expectation of reciprocity, and an expectation of public involvement and benefit sharing.
|
“Qualitative research shows that donation
to biobanks is a complex process shaped
by donors’ embeddedness in a number of
social contexts; by complex relations of
trust in biomedicine; and by the
ambiguous status of human tissue. While
these findings are theoretically and
practically useful, current sociological
theorising is very general. A more
detailed and nuanced ‘sociology of
biobanking’ is needed, and this might be
best achieved by exploring specific
theoretical questions in a variety of
biobanking settings.” (p. 792) |
Chan et al.
2012 (24) |
Systematic review of
18 qualitative and
mixed-methods
studies of patient
perceptions of
research use of
residual clinical
samples, 1990–2010
(international) |
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■
All of the authors of the reviewed studies failed to clearly describe the methodology and paradigm used in their research. Thus, the reviewers were unable to assess the congruity (or otherwise) between the stated philosophical perspectives and the research methodology and objectives.
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■
Patient consent to the use of leftover tissue is a complex interaction between many factors and not driven solely by perceptions of benefits to self or others.
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■
Health care institutions and regulatory authorities must provide clear and transparent safeguards and controls and communicate these to patients prior to the consenting process.
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■
Views on ownership and rights to the future use of leftover tissue vary among patients and influence their willingness to consent to further use.
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■
Patients have divided views on the use of their leftover tissue for commercial purposes.
|
“For leftover tissues to be used, patients
must clearly understand: the type of
consent they are providing (opt in or opt
out); the parameters for the future
research use of their leftover tissues; the
safeguards put into place to protect the
individual and the donated tissue from
unethical use; and the commercial
implications of their consent.” (p. 9) |
Rachul et al.
2012 (113) |
Systematic review of
87 quantitative and
qualitative studies of
public perceptions of
biobanking,
1996–2011
(international) |
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■
The public seems relatively comfortable with a variety of consent scenarios; however, when forced to choose a preference, there is little consensus that any particular type of consent would be best.
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■
The majority of participants in most studies report being willing to participate in biobank research.
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■
There is substantial variation in individual concerns about privacy and who participants think should be able to access their samples.
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■
There is some consensus that, when asked hypothetically and generally, the majority of participants report a desire for research results and incidental findings.
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■
The ability to withdraw, as a basic human right and/or as a factor in participation decisions, appears to be an area of agreement.
|
“With few exceptions (e.g., return of
results and withdrawal), what is disclosed
by this review of survey work is a lack of
consensus on key issues, especially in the
context of the nature of consent
required.” (p. 1) |
Nobile et al.
2013 (101) |
Systematic review of
13 quantitative and
qualitative studies of
biobank participants’
reasons for enrolling,
2006–2012
(international) |
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■
Reasons for enrolling in population biobank studies stem from personal attitudes (altruism, trust, or optimism), subjective perceptions of costs (ease of procedure or an institution’s reputation), subjective perceptions of benefits (personal benefit or benefit to others), and contextual level (family history of disease or pressure from institution/study personnel).
|
“Our review showed that, next to personal
attitudes such as altruism and subjective
perception of a participation entailing few
burdens and low risk, personal benefit
through health-related information is
frequently expressed as a motivator to
enroll in biobank research among
randomly selected participants. Given the
fact that our review addressed apparently
healthy donors, the magnitude of this
expectation is striking and quite
unsettling.” (p. 44) |
D’Abramo
et al. 2015
(31) |
Content analysis of
10 quantitative and
qualitative studies of
biobank participants’
perceptions and
views of consent,
2005–2014
(international) |
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■
The majority of research participants opted for some version of limited consent when being informed about such a possibility. Among the factors influencing the type of preferred consent were information about sponsorship of biobank research by the pharmaceutical industry and participants’ trade-off between privacy and perceived utility.
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■
Studies investigating research participants’ understanding and recall regarding the consent procedure indicated considerable lack of both the above aspects.
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■
Research participants’ perceptions of benefits and harms differ across those studies.
|
“Our review suggests that there are two
important issues related to how ethically
acceptable consent can be elicited in
research practice beyond the focus of the
theoretical literature on justifications of
broader or narrower approaches to
consent. Firstly, the choices provided as
part of the consent procedure, and
secondly, the way in which potential
research participants are informed about
biobank research.” (p. 8) |
Garrison
et al. 2016
(43) |
Systematic review of
48 quantitative and
qualitative studies of
public opinion on
broad consent and
data sharing,
2001–2015 (United
States) |
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■
Although the majority of respondents often expressed support for broad consent when that was the only choice offered, only a minority favored broad consent when other options, such as tiered or study-specific consent, were offered.
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■
Willingness to give broad consent increased when data were deidentified, the logistics of biobanks were communicated, and privacy was addressed.
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■
Willingness for data to be shared was generally high, but it was lower among individuals from underrepresented minorities, among individuals with privacy and confidentiality concerns, and when pharmaceutical companies had access to data.
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■
Although a few studies generally found that men were more likely to support broad consent, most investigators did not examine the impact of gender on attitudes. Although data about race/ethnicity are incomplete, it seems that minorities often have more concerns about broad consent, although existing evidence suggests that these concerns can be ameliorated in some cases by discussion and education. Much less is known about the impact of sociodemographic factors.
|
“Additional research is needed to
understand factors affecting willingness to
give broad consent for biobank research
and data sharing in order to address
concerns to enhance acceptability.”
(p. 663) |
