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Journal of Community Genetics logoLink to Journal of Community Genetics
. 2023 Jan 20;14(3):275–285. doi: 10.1007/s12687-023-00634-2

Public’s awareness of biobanks and willingness to participate in biobanking: the moderating role of social value orientation

Matúš Grežo 1,✉, Martin Sedlár 1
PMCID: PMC10272000  PMID: 36662375

Abstract

Although the awareness of biobanks is considered to be a key factor in the willingness to participate in biobanking, the empirical evidence on their relationship is inconsistent. The present study investigated social value orientation as an explanatory factor in this relationship. A representative sample of 600 Slovaks completed Slider Measure to assess their social value orientation. Thereafter, they reported their level of awareness of biobanks and their willingness to provide biospecimens and personal information to biobanks. The results showed a positive relationship between awareness and willingness. Although social value orientation was not the moderator, we found that this relationship was significant only in the groups of altruists and individualists. The results remained robust after taking sociodemographic and institutional trust factors into account. Our findings imply that biobank awareness programmes should highlight both prosocial and proself motives to attract people with various social value orientations to participate in biobanking.

Keywords: Awareness, Willingness to participate, Biobank, Social Value Orientation, Institutional trust

Introduction

One of the most important cornerstones of current biomedical research is the collection and storage of biological samples in biobanks. To deeply explore how various human diseases occur in relation to specific genes and environments, biomedical researchers need to dispose of rich biological samples along with the complex data on people’s medical records and lifestyle. Yet, collecting and storing such data seems to be a challenge, since biobanks rely heavily on voluntary contributions. Thus, the public’s willingness to participate in biobanking, i.e. providing biospecimens along with personal data, is a vital factor that shapes the actual success of biomedical research.

Given the upsurge of biobanks, increased attention of researchers has been paid to identifying specific individual factors that shape people’s willingness to participate in biobanking. The literature highlights one particular factor standing as a keystone of such willingness, which is the public’s awareness of biobank research (Amin et al. 2018; Gaskell and Gottweis 2011; Kettis-Lindblad et al. 2006). To foster this willingness, some authors suggest various practical solutions, such as informing the public about biobanking through mainstream media or conducting various awareness campaigns (Ahram et al. 2014; Amin et al. 2018). Yet, despite this emphasis, the empirical research on the relationship between the awareness of and willingness to participate in biobanking provides inconclusive evidence (e.g. Bossert et al. 2018; Abdelhafiz et al. 2019; Merdad et al. 2017; Mezinska et al. 2020).

Concurrently, there are other important psychological factors that relate to the willingness to participate in biobanking (see Domaradzki and Pawlikowski 2019 for a review). Studies on social preferences show that prosocial orientation and altruism predict the extent to which people are willing to participate in biobanking or donate their body and organs (e.g. Morgan and Miller 2002; Bekkers 2006; Broekstra et al. 2020b, 2021; Sojka and Sojka 2008; Hill 2016; Andel et al. 2016; Manesi et al. 2019). In fact, these stable preferences may shape the actual relationship between the awareness of and willingness to participate in biobanking. In particular, being aware of and knowledgeable about biobanking may be important for willingness only when it comes to individuals with prosocial orientation. In these individuals, awareness may activate a moral obligation which shapes the intention to exercise this prosocial behaviour (Schwartz 1977).

To delve deeper into the relationship between the awareness of biobanks and the willingness to participate in biobanking, the present study builds on the theory of social value orientation (SVO; Murphy et al. 2011). In particular, the study goes beyond observing a direct link between awareness and willingness and, instead, hypothesises that the relationship between these two is dependent on individuals’ social preferences. The main aim of the present study is, therefore, to examine whether SVO acts as a moderator of the relationship between the awareness of biobanks and the willingness to participate in biobanking. Lastly, since previous research showed that the willingness to participate in biobanking may be affected by a number of sociodemographic factors (e.g. Brall et al. 2021; Broekstra et al. 2021; Kettis-Lindblad et al. 2006) and by institutional trust (e.g. Antommaria et al. 2018; Dive et al. 2020; Sanderson et al. 2017; Broekstra et al. 2021; Critchley et al. 2012), we include these factors to control for their effects.

The relationship between the awareness of biobanks and the willingness to participate in biobanking

The Eurobarometer survey (European Commission and European Parliament 2010) on the awareness of biobanks showed that 66% of Europeans had never heard of biobanks. Such low awareness seems to be striking, since awareness is believed to be a crucial factor affecting people’s understanding of biomedical science as well as their willingness to participate in biobanking. As Bossert et al. (2018) point out, people need to possess a certain level of awareness and knowledge to form an opinion on biobanking and be willing to participate in such prosocial activity. In response to this low awareness, several authors propose implementing various awareness programmes and instruments that could help to increase the knowledge on biobanking. Amin et al. (2018) and Bossert et al. (2018) hypothesise that these awareness instruments should lead to an increase in the public’s trust towards biomedical research and institutions, which, in turn, should foster the actual willingness to participate in biobanking.

Although awareness is believed to be an important factor, the findings on the actual relationship between the awareness of and willingness to participate in biobanking are not so straightforward. Based on Eurobarometer’s data, Gaskell et al. (2013) showed that those who were aware of biobanks and also showed active engagement (searching for and talking about biobanks) were more willing to participate than were those who showed only passive engagement and those who had not heard the term “biobank” previously. Likewise, other studies (Ahram et al. 2012; Dash et al. 2014; Abu Farha et al. 2020; Goddard et al. 2009; Merdad et al. 2017; Mezinska et al. 2020) found that the awareness and knowledge of biobanking positively related to the willingness to donate biospecimens. These findings are in line with other studies on the willingness to donate bodies and organs (Horton and Horton 1990; Rokade and Gaikawad 2012).

In contrast, some studies provided evidence that there is no significant relationship between the awareness of biobanks and the willingness to participate in biobanking (Bossert et al. 2018; Abdelhafiz et al. 2019; Tsvetkova et al. 2016; Lhousni et al. 2020). Rahm et al. (2013) found that those willing to participate in biobanking possessed a similar level of knowledge on biobanking than those who were unsure about participating. Moreover, closely related studies (Delaney and White 2015; Hyde and White 2007; Lemmens et al. 2005) suggest that being aware of and knowledgeable about blood, body or organ donation is not necessarily associated with a greater willingness to participate or actual participation in such prosocial behaviour. These findings are consistent with those of Ajzen et al. (2011). In line with the theory of planned behaviour, the study found that being aware and well informed is neither sufficient nor necessary for the occurrence of a certain intention or behaviour. Instead, what matters more are an individual’s attitudes towards that specific intention or behaviour. With regard to the willingness to participate in biobanking, this may suggest that being aware of and knowledgeable about biobanking may matter mostly for prosocial or altruistically oriented individuals who already have positive attitudes towards donating biospecimens.

Social value orientation and the willingness to participate in biobanking

The evidence that individuals’ stable social preferences matter for the willingness to participate in biobanking or become an organ and body donor is well documented. In particular, altruistic and prosocial motivations were shown to be one of the most important factors related to attitudes towards biobank participation and donation (e.g. Horton and Horton 1990; Bolt et al. 2010; Lhousni et al. 2020; Hyde et al. 2013; Kettis-Lindblad et al. 2006; Lee et al. 2012; Morgan and Miller 2002; Sojka and Sojka 2008). These motivations include a general feeling of duty, a desire to contribute to a common good, helping others and future generations, and helping to generate the knowledge required for new therapies (see Domaradzki and Pawlikowski 2019; Critchley et al. 2020; Broekstra et al. 2020a).

The individual differences in persons’ concerns for others or desires to contribute to a common good have been studied in parallel under various, differently named research areas (Murphy and Ackermann, 2014), including social preferences, social motives, other-regarding preferences, altruism, collective interest and welfare trade-off ratios. These concepts are well represented by the theory of social value orientation (SVO; e.g. Kuhlman and Marshello 1975; Messick and McClintock 1968; Van Lange and Kuhlman 1994). The theory is based on the notion that individuals manifest stable preferences when they have to weigh the outcomes for themselves and for others (Ackermann et al. 2016).

Most commonly, the literature distinguishes two general types of SVO: prosocial and proself (e.g. Atilgan and Markovsky 2021; Bieleke et al. 2017; Bernold et al. 2015; Qi et al. 2018; Pavitt et al. 2009). Both of these categories are, however, often divided into two subcategories, resulting in the distinction of altruists, cooperatives, individualists and competitives (see Murphy et al. 2011). Altruists seek to maximise others’ outcomes at their own expense. Cooperatives tend to maximise joint outcomes and minimise the outcome difference between the self and others. Individualists tend to maximise outcomes for themselves with little or no regard for others. Lastly, competitives seek to maximise their outcomes but also tend to maximise the relative difference between their own and others’ outcomes.

The research suggests that prosocials differ from proselfs in several ways. In particular, many studies have shown that, overall, prosocials cooperate more, have higher trust in others and act less dishonestly than proselfs (e.g. Anderson and Patterson 2008; Balliet et al. 2009; De Cremer 2000; Mill and Theelen 2019; Pletzer et al. 2018; Simpson and Willer 2014; Van Lange et al. 2013). Moreover, compared to proselfs, prosocials engage in a greater variety of donation acts, especially to organisations aimed at helping the poor and the ill (Van Lange et al. 2007).

Importantly, there exist studies showing a positive link between SVO and the willingness to participate in biobanking as well as actual participation. For instance, Broekstra et al. (2020b) found that those who participated in biobanking showed significantly higher levels of SVO (i.e. were more prosocial and altruistic) than the levels shown by those who refused to participate. Moreover, they were also more commonly contributors to charities, blood donors and organ donors. Extending these findings, Broekstra et al. (2021) found that SVO positively related to the motivation to participate in biobanking based on perceived societal benefits and predicted individuals’ willingness to share their biobank data for large-scale scientific research. These findings are in line with other related studies showing a positive relationship between SVO and organ and blood donation (Bekkers 2006; Andel et al. 2016).

Social value orientation as an explanatory factor in the relationship between the awareness of and willingness to participate in biobanking

As pointed out above, both the awareness of biobanks and social preferences were shown to be related to the willingness to participate in biobanking. The present study, however, delves deeper into the links between these three variables, taking the Norm Activation Model (NAM; Schwartz 1977) into account. This theory was originally developed to explain altruistic behaviour through the use of three interconnected factors, as follows. One’s awareness of the possible negative consequences for others if one is not acting altruistically (adverse consequences) elicits feelings of responsibility for acting or not acting altruistically (ascribed responsibility), which, in turn, activate a moral obligation to perform or refrain from such behaviour (personal norm).

Applying the NAM in the context of biobanking, it can be said that if a person has never heard of biobanks and does not possess any knowledge on biobanking, he or she cannot be aware of any consequences that may be caused by his or her (non-)participation. In this sense, being aware of biobanks is essential for the occurrence of the feelings of responsibility for participating, as well as activating a moral obligation to participate. However, what is important to note is that being aware of and knowledgeable about biobanks may not be sufficient to elicit the willingness to participate, because attitudes towards such behaviour play a more important role (Ajzen et al. 2011).

As we believe, SVO plays an important part in the relationship between awareness and willingness. In particular, if prosocially oriented people are aware of the consequences of their actions, this may lead to feelings of responsibility and a moral obligation to participate, simply because of their prosocial nature. This pattern, however, may not be present in proself-oriented people who seek to maximise their own outcomes with little or no regard for others. They may not feel responsible in these situations, leading to a substantively different personal norm regarding how to act in this matter.

In line with the assumed differences between prosocials and proselfs, we hypothesise that SVO moderates the relationship between the awareness of biobanks and the willingness to participate in biobanking. In particular, we expect that for cooperatives and altruists, such awareness is positively related to the willingness to participate in biobanking. For individualists and competitives, however, we hypothesise that there is no significant relationship between awareness and willingness.

Method

Participants and procedure

A representative sample of 600 Slovaks (300 men, 300 women) aged 18 to 78 years

(M = 45.20; SD = 14.82) were hired by a research agency to complete an online survey hosted on Qualtrics. Before signing an informed consent form, the participants were provided with general information on the aim of the study, with instructions regarding participation in the study, and with information on their rights to remain anonymous and to withdraw from participation at any time. As part of a larger data collection1, participants first answered sociodemographic questions and then completed measures of institutional trust, social value orientation, awareness of biobanks and willingness to participate in biobanking. The survey contained three attention check items. Individuals who failed to select the correct answers were excluded. The dataset is available at the Open Science Framework repository (https://osf.io/w82pz/?view_only=fbf64fe0154144c196405e999ad35da0).

Measures

Social value orientation

The Social Value Orientation Slider Measure (Murphy et al. 2011) consists of six primary items capturing the most common idealised social value orientations reported in the literature — altruistic, cooperative, individualistic and competitive2. Each item has the same general form and represents a resource allocation choice over a well-defined continuum of joint payoffs. For example, a participant has to choose a value x between 50 and 100 inclusive. His or her payoff would be the chosen value x, whereas the others’ payoff would be 150 minus x. In our study, participants indicated their allocation choices, regarding the amount of money in euros, by marking the most preferred joint distribution. Based on these allocation choices, a resulting angle was computed, representing a continuous version of one’s SVO (a higher score represents a more prosocial orientation). Thereafter, according to the resulting angle standards proposed by Murphy et al. (2011), participants were categorised into one of four SVO groups — altruistic, cooperative, individualistic and competitive.

Awareness of biobanks

Before examining the awareness of biobanks and the willingness to participate in biobanking, the participants were presented with information on biobanking. This information was adapted from the method used in Eurobarometer (European Commission and European Parliament 2012). Thereafter, the participants were presented with three questions used in Eurobarometer (European Commission and European Parliament 2012), asking if they had ever heard anything about biobanks before, if they had ever talked about biobanks with anyone before, and if they had ever searched for information about biobanks. They answered on a four-point scale (1 = no, never, 4 = yes, frequently).

Willingness to participate in biobanking

The participants were presented with two questions, adapted from a method used by Hagiwara et al. (2014), asking about how willing they were to participate in biobanking. Specifically, the first question asked them to indicate their willingness to donate each of the seven specific biospecimens (blood, skin, saliva, urine, tissue collected during surgery, hair, nails), while the second question asked them to indicate their willingness to provide each of the three types of personal information (general personal information — age, gender, birth date and race/ethnicity; contact information — home address, full name, phone number, email address; personal and family health history) along with the biospecimens to a biobank. The participants answered on a five-point scale (1 = very unwilling, 5 = very willing).

Institutional trust

Previous research has shown that the willingness to participate in biobanking is predicted by institutional trust. In particular, trust in biobanks, scientific or university institutions, or government was shown to be important (e.g. Antommaria et al. 2018; Dive et al. 2020; Sanderson et al. 2017; Broekstra et al. 2021; Lhousni et al. 2020; Kettis-Lindblad et al. 2006; Critchley et al. 2012). To control for the effects of these variables, we included them in our study.

Inspired by measuring institutional trust in cross-national surveys (e.g. ESS Round 9: European Social Survey 2021; European Commission and European Parliament 2019), we asked questions about how much participants trusted each of the four specific institutions (government, educational institutions, scientific institutions and health institutions). They answered on a five-point scale (1 = do not trust at all, 5 = trust completely).

Sociodemographic characteristics

The research stream focusing on sociodemographic factors indicates that willingness is affected by age (Lee et al. 2012; Rahm et al. 2013), education (Brall et al. 2021; Broekstra et al. 2021; Kettis-Lindblad et al. 2006; Sanderson et al. 2017) or living in a bigger residential area (Broekstra et al. 2021).

The participants were therefore asked to indicate their age, gender, education and size of their residential area. Along with institutional trust variables, these sociodemographic characteristics were handled as control variables.

Statistical analysis

Firstly, the reliability of questionnaires was assessed using McDonald’s omega reliability tests, and descriptive statistics and Pearson’s correlation analysis were conducted. Thereafter, our hypothesised model was tested in PROCESS version 3.4, Model 1 (Hayes 2018). The model tested whether the relationship between the predictor (X = awareness of biobanks) and the outcome (Y = willingness to participate in biobanking) is moderated by the moderator variable (W = social value orientation). This model was tested also with sociodemographic (age, gender, education, residential area) and institutional trust variables (trust in government of the Slovak Republic, trust in educational institutions, trust in scientific institutions, trust in health institutions) that were entered in order to control for their effects. Moderation was concluded to occur when the inclusion of the interaction between awareness and SVO led to a significant increase in the explanation of the variance of the willingness to participate in biobanking.

Results

Descriptive statistics and correlation matrix

The descriptive statistics along with the correlation matrix and reliability coefficients for the study variables are reported in Table 1. The willingness to participate in biobanking was in very weak to weak positive relationships with the awareness of biobanks, SVO and all institutional trust variables. Besides, the awareness of biobanks showed a very weak positive relationship with age, and SVO showed very weak positive relationships with education and gender, as well as a very weak negative relationship with residential area. It is noteworthy that we found that the level of awareness of biobanks is still considerably low in Slovakia. Of all 600 participants, 281 (46.8%) had never heard anything about biobanks, 505 (84.2%) had never talked about biobanks, and 540 (90%) had never searched for information about biobanking. Finally, the highest average willingness to participate in biobanking was found in the group of altruists (M = 3.44; SD = 1.10), followed by cooperatives (M = 3.33; SD = .93), individualists (M = 3.13; SD = 1.18) and competitives (M = 3.03; SD = 1.21).

Table 1.

Descriptive statistics and correlation matrix

Variable M SD 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11.
1. Awareness of biobanks 1.40 0.55 (.81)
2. Willingness to participate 3.33 1.10 .15*** (.94)
3. Social value orientation 42.83 29.20 .07 .15*** –
4. Trust in government 1.79 0.98 .01 .18*** .04 –
5. Trust in educational institutions 3.19 0.94 −.01 .15*** .05 .29*** –
6. Trust in scientific institutions 3.61 0.97 −.01 .25*** .07 .25*** .61*** –
7. Trust in health institutions 3.39 0.98 −.02 .26*** .07 .32*** .61*** .75*** –
8. Gender – – −.03 −.02 11** −.01 .06 −.04 −.06 –
9. Age 45.20 14.82 .16*** .03 −.08* −.01 .00 −.08* −.09* −.08 –
10. Residential area – – .01 −.13** .03 −.04 −.08* −.12** −.09* .05 .01 –
11. Education – – .01 .07 .09* .06 .11** .18*** .15*** .05 −.06 −.24*** –
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Values in parentheses report McDonald’s omega reliability coefficients; * p < .05; ** p < .01; *** p < .001

Moderation analysis without control variables

Before conducting the moderation analysis, we screened for multivariate outliers through the use of Mahalanobis distances, Cook’s distances and leverages. The test revealed two cases with a score exceeding a critical value for all three diagnostics; therefore, we excluded them prior to the moderation analysis.

A simple moderation analysis using the PROCESS macro was performed to test the hypothesis that the relationship between the awareness of biobanks and the willingness to participate in biobanking is moderated by SVO. Firstly, we performed a moderator analysis without including control variables. The overall model was statistically significant (F(3, 594) = 9.35; p < .001; R2 = .05). The awareness of biobanks was shown to be an independent significant predictor of the willingness to participate in biobanking, but SVO showed no significant effect. Importantly, the interaction between awareness and SVO was not significant, suggesting that SVO did not moderate the effect of awareness on willingness (see Table 2). The interaction between awareness and SVO added only negligible explained variance to the model (F(1, 594) = .06; p = .80; ∆R2 = .0001).

Table 2.

Direct effects and interaction between awareness and social value orientation on willingness in the moderation model without control variables

Variable b SE t p 95% CI [LL, UL]
F(3, 594) = 9.35; p < .001; R2 = .05 – – – – –
Awareness .35 .16 2.18 <.001 [2.20, 3.07]
SVO .01 .004 −1.41 .16 [−.002, .01]
Interaction awareness × SVO −.001 .003 −.25 .80 [−.01, .01]
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Although the interaction between awareness and SVO was not significant, we examined the conditional effect of awareness on willingness through the use of simple slopes. In particular, we analysed simple slopes for the four SVO groups proposed by Murphy et al. (2011). We found that awareness significantly predicted willingness only in the groups of altruists (b = .36; SE = .12; t(590) = 3.07; p = .002; 95% CI [.13, .59]) and individualists (b = .72; SE = .24; t(590) = 3.04; p = .003; 95% CI [.26, 1.19]), while in the groups of cooperatives (b = .14; SE = .14; t(590) = .95; p = .34; 95% CI [−.14, .42]) and competitives (b = .12; SE = .32; t(590) = .37; p = .71; 95% CI [−.51, .75]) the effect was not significant. In conclusion, as shown in Fig. 1, as the level of awareness increases, so does the willingness to participate in biobanking. This trend was found for all four SVO groups.

Fig. 1.

Fig. 1

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Conditional effects of the awareness of biobanks on the willingness to participate in biobanking in two models with and without control variables

Moderation analysis with control variables

To see how the relationships between awareness, SVO and willingness appear after taking sociodemographic variables and institutional trust variables into account, we included them in the moderation model as covariates in the next step. The model was statistically significant (F(11, 586) = 8.18; p < .001) and the explained variance of the willingness to participate in biobanking increased from 5% to 13.3% (R2 = .13). Compared to the previous model, awareness still positively predicted willingness, while SVO showed no significant effect. The interaction between awareness and SVO remained not significant (Table 3) and added only negligible explained variance to the model (F(1, 586) = 1.37; p = .77; ∆R2 = .0001).

Table 3.

Direct effects and interaction between awareness and social value orientation on willingness in the moderation model including control variables

Variable b SE t p 95% CI [LL, UL]
F(11, 586) = 8.18; p < .001; R2 = .13 – – – – –
Awareness .33 .15 2.18 .03 [.03, .64]
SVO .01 <.01 1.40 .16 [−.002, .01]
Interaction awareness × SVO ≤.01 <.01 −.29 .77 [−.01, .004]
Age <.01 <.01 .90 .37 [−.003, .008]
Gender −.01 .09 −.16 .87 [−.18, .15]
Residential area −.09 .04 −2.51 .01 [−.16, −.02]
Education −.01 .04 −.21 .83 [−.08, .06]
Trust in government .12 .05 2.53 .01 [.03, .20]
Trust in educational institutions −.07 .06 −1.15 .25 [−.19, .05]
Trust in scientific institutions .15 .07 2.16 .03 [.01, .29]
Trust in health institutions .16 .07 2.28 .02 [.02, .30]
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Regarding the direct effects of control variables, gender, age, education and trust in educational institutions did not significantly predict the willingness to participate in biobanking. In turn, trust in government, trust in scientific institutions and trust in health institutions positively predicted willingness, while residential area showed a negative significant effect (Table 3).

As in the previous model without control variables, we examined the interaction between awareness and SVO through the use of simple slopes for four SVO categories. In general, we found a very similar pattern (Fig. 1). Awareness significantly predicted willingness for the groups of altruists (b = .32; SE = .11; t(582) = 2.85; p = .005; 95% CI [.10, .55]) and individualists (b = .68; SE = .23; t(582) = 2.96; p = .003; 95% CI [.23, 1.13]), but had no significant effect for the groups of cooperatives (b = .15; SE = .14; t(582) = 1.09; p = .27; 95% CI [−.12, .43]) and competitives (b = .16; SE = .31; t(582) = .52; p = .61; 95% CI [−.45, .76]).

Discussion

The purpose of the present study was to gain a better understanding of how the relationship between the awareness of biobanks and the willingness to participate in biobanking occurs for people with different social value orientations. Building on the inconsistent findings on the relationship between awareness and willingness, we hypothesised that awareness matters for prosocials, i.e. altruists and cooperatives, but not for proselfs i.e. individualists and competitives. Although our findings are not in line with this hypothesis and there was no moderating effect of SVO on the relationship between awareness and willingness, we found that awareness significantly matters for altruists and individualists. In addition, our findings provide convincing evidence that, in general, the awareness of biobanks is an important factor when it comes to people’s intention to participate in biobanking.

The awareness of biobanks in relation to the willingness to participate in biobanking

Perhaps the most promising finding of the present study is that the more people were aware of biobanks, the more they were willing to participate in biobanking. This contradicts the study conducted by Ajzen et al. (2011), which showed that being aware and well informed is neither sufficient nor necessary for the occurrence of a certain intention or behaviour. On the contrary, our findings are in line with the majority of literature finding a positive relationship between awareness and willingness (Ahram et al. 2012; Dash et al. 2014; Gaskell et al. 2013; Abu Farha et al. 2020; Goddard et al. 2009; Merdad et al. 2017; Mezinska et al. 2020). This may provide support for the claim that a certain level of awareness is necessary for the occurrence of the willingness to participate (Bossert et al., 2018). Our findings are also in line with those of Gaskell et al. (2013), who found that active engagement, i.e. searching for and talking about biobanks, is associated with the highest levels of willingness to participate in biobanking.

An important note, however, is that the relationship between awareness and willingness was weak and, along with SVO, awareness explained a rather limited variance of the willingness to participate. This may suggest that there are other and perhaps more important factors that relate to willingness strongly. In this regard, our study did not identify such factors. We found that trust in government, trust in scientific institutions and trust in health institutions were positively related to willingness, supporting previous literature pointing to the importance of institutional trust in the willingness to participate in biobanking (e.g. Antommaria et al. 2018; Dive et al. 2020; Sanderson et al. 2017; Broekstra et al. 2021; Lhousni et al. 2020; Kettis-Lindblad et al. 2006; Critchley et al. 2012). All institutional trust factors, however, showed weaker relationships than did awareness. Moreover, sociodemographic factors performed even worse, with only the size of a residential area having a very weak negative relationship. This is not surprising, since previous studies showed mixed results for age, gender or education (Lee et al. 2012; Rahm et al. 2013; Brall et al. 2021; Broekstra et al. 2021; Kettis-Lindblad et al. 2006; Sanderson et al. 2017).

In conclusion, of all observed factors, awareness showed the strongest association with willingness and this relationship remained robust after including control variables. Thus, our findings may provide support for the importance of carrying out various awareness programmes to increase the public’s knowledge on biobanking and intention to participate. Consistent with the findings of Gaskell and Gottweis (2011), we believe that awareness programmes should not only educate people about biobanking, but also encourage people to actively engage with biomedical topics and biobanking, such as voluntarily seeking more information or thinking and talking about biobanking with family members and relatives.

The role of social value orientation in the willingness to participate in biobanking

The evidence that prosocial and altruistic motives are a key to the willingness to participate in biobanking (e.g. Lhousni et al. 2020; Domaradzki and Pawlikowski 2019; Critchley et al. 2020; Broekstra et al. 2020a) has brought us to believe that individuals’ stable social preferences may moderate the relationship between awareness and willingness. Our findings, however, do not support this hypothesis. The first unexpected finding was that SVO did not relate to the willingness to participate in biobanking. This result does not correspond to studies conducted by Broekstra et al. (2020b; 2021), who found a positive association between SVO and willingness. An important note is, however, that studies undertaken by Broekstra and colleagues measured SVO through the use of a self-report scale, while our measure was based on the actual allocating choices in the Slider Measure (Murphy et al. 2011). As Murphy et al. (2014) pointed out, attitudinal self-report measures are rarely used for measuring social preferences and may be considered inferior in comparison to measuring real behaviour in allocating choices. At this point, we could only speculate that the significant association between SVO and willingness in Broekstra et al.’s (2020b, 2021) studies was due to the methodological similarity of measures that they used. Future research is needed to shed light on these inconsistent findings.

The second unexpected finding of this study was that SVO did not moderate the relationship between awareness and willingness. In particular, we found a positive relationship between awareness and willingness for all four SVO groups of altruists, cooperatives, individualists and competitives. This relationship was, however, significant only in the groups of altruists and individualists. Following Schwartz’s (1977) NAM, we believed that increased awareness of altruists and cooperatives elicits a moral obligation to participate in biobanking, resulting in a greater association with the willingness to participate. Our findings, however, do not support this. On the contrary, the strongest association between awareness and willingness was found in the group of individualists. This seems to be slightly counterintuitive, especially because proself-oriented people were shown not to engage in donation acts (Van Lange et al. 2007).

An explanation as to this unexpected finding could be drawn from different motives for participating in biobanking. In particular, being aware of and knowledgeable about biobanking may also include knowledge on what specific benefits such participation provides for both society and oneself. Altruists and cooperatives may be mostly focused on and aware of prosocial motives and benefits, such as contributing to a common good, helping others and future generations, or helping to generate knowledge. Individualists and competitives, in turn, might be more aware of proself motives and benefits, such as present or future benefits for themselves and their families. These personal benefits may include gaining access to a higher standard of care or better diagnostic methods, contributing to the development of new diagnostic methods and treatments that participants might use in the future, receiving information on their health or feeling that they have done something positive for their health or fulfilled their social or familial obligations (Hallowell et al., 2010). Importantly, although the different SVO groups may have different motives for participating, our study suggests that they may realise them more with more awareness and knowledge of biobanks. This is then reflected in a greater willingness to participate in biobanking. Future research is needed to see whether people with different SVOs differ in their motives for participating in biobanking.

Although SVO did not provide an explanation as to the relationship between awareness and willingness, our results seem to be in line with the general notion that people differ in their concerns for others according to their SVO. In particular, we found that the highest willingness to participate in biobanking was shown in the group of altruists, followed by cooperatives, individualists and competitives. This seems to be in line with findings that prosocials care about the outcomes of others, while proselfs tend to maximise their own outcomes with little or no regard for others (e.g. Atilgan and Markovsky 2021; Van Lange et al. 2013). Our results thus complement previous findings on the effect of social preferences on various prosocial behaviours (e.g. Anderson and Patterson 2008; Balliet et al. 2009; De Cremer 2000; Mill and Theelen 2019; Pletzer et al. 2018; Simpson and Willer 2014) and extend them by showing that this stable characteristic may potentially be associated with health-related philanthropy behaviour as well.

Study limitations and directions for future research

Despite our best efforts, there are at least three potential limitations of this study. A first limitation concerns the cross-sectional nature of the study. Consequently, although we found a positive relationship between awareness and willingness, we cannot draw conclusions as to the causal relations between these two. In other words, although it seems to be theoretically justifiable that awareness determines willingness and not vice versa, we cannot infer such a conclusion from our findings. On the contrary, caution is exercised also when it comes to other similar studies (e.g. Amin et al. 2018; Gaskell and Gottweis 2011; Kettis-Lindblad et al. 2006). Future longitudinal studies could reveal whether changes in the public’s awareness of biobanks really foster the willingness to participate in biobanking, as well as actual participation.

A second potential limitation could lie in the instrument for measuring awareness. In particular, we believe that the chosen method assesses one’s awareness sufficiently, but it may not reflect much on what actual knowledge on biobanking an individual possesses. We may only speculate that those who have heard of and searched for information on biobanks previously possess more knowledge than do those who have not heard of the term “biobank.” Since factual knowledge was shown to be an important factor in the willingness to participate in biobanking (Dash et al. 2014; Abu Farha et al. 2020; Merdad et al. 2017), we encourage researchers to use more sophisticated measures in the future.

Finally, a third limitation is that our study addressed a hypothetical willingness to participate in biobanking, but does not tell anything about actual participation in biobanking. The question thus remains as to whether being aware of and knowledgeable about biobanks relates to actual participation in the same way as with the willingness to participate. As Ajzen et al. (2011) pointed out, it may be a mistake to think that once people have a good understanding of a certain issue, they will engage in socially desirable behaviour. Since there are some indications that the willingness to participate may not always predict actual participation rates (Johnsson et al. 2010), future research is needed to shed light on the relationships between the awareness of biobanking, the willingness to participate in biobanking and actual participation in biobanking.

Conclusion

Since biobanks rely heavily on voluntary contributions, the public’s willingness to participate in biobanking is a key factor determining the success of biomedical research. Examining the psychological factors that relate to the willingness to participate in biobanking may have important practical implications for increasing the public’s participation rates. A promising finding of this study is that the more people are aware of and knowledgeable about biobanks, the more they are willing to participate in biobanking and, importantly, this positive pattern was found for both prosocials and proselfs. Since these two groups differ in how they weigh the outcomes for themselves and for others, the awareness programmes aimed to increase the knowledge on biobanking should reflect these differences and highlight both prosocial and proself motives and concerns.

Author contributions

MG and MS conceptualised the study and set up the methodology. MG conducted the investigation and formal analysis. Both MG and MS wrote the original draft and reviewed and edited the paper.

Funding

This publication has been produced with the support of the Integrated Infrastructure Operational Program for the project: Systemic public research infrastructure - biobank for cancer and rare diseases, ITMS: 313011AFG5, co-financed by the European Regional Development Fund. This publication has been supported by the Scientific Grant Agency of the Ministry of Education, Science, Research and Sport of the Slovak Republic and Slovak Academy of Sciences - Grant No. VEGA 2/0035/20:Cognitive and personality predictors of trust building.

Data availability

The dataset generated and analysed during the current study is available in the Open Science Framework repository, https://osf.io/w82pz/?view_only=fbf64fe0154144c196405e999ad35da0.

Declarations

Compliance with ethics guidelines

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000.

Consent to participate

Informed consent was obtained from all patients for being included in the study.

Consent to publish

Not applicable.

Competing interests

The authors declare no competing interests.

Footnotes

1

Part of the data collection was presented in the study by Sedlár and Grežo (2022).

2

Murphy et al. (2011) used different labelling for the four SVO groups (altruistic, prosocial, individualistic, and competitive). This labelling, however, may cause misunderstandings, since other papers conceptualise two main SVO groups of prosocials (altruists and cooperatives) and proselfs (individualists and competitives). Since we wanted to avoid the confusion surrounding whether we refer to prosocials as a specific group or as a joint group consisting of altruists and cooperatives, we decided to label Murphy et al.’s (2011) prosocials as a group of cooperatives.

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Matúš Grežo, Email: matus.grezo@savba.sk.

Martin Sedlár, Email: martin.sedlar@savba.sk.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The dataset generated and analysed during the current study is available in the Open Science Framework repository, https://osf.io/w82pz/?view_only=fbf64fe0154144c196405e999ad35da0.

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