We distinguished five themes relating to the motives, values, and expectations of ex-participants, participants, and non-participants in our dataset. The first three themes pertained to views and motives regarding the initial or current participation of ex-participants and participants. The last two themes touched on the ex-participants’ views and motives relating to their withdrawal and on non-participants’ views.
Contribution to the Public Good: Science, Healthcare, and Society
Initially, most of the participants perceived their participation in Lifelines in terms of the donation of their time, information, and data to a public good, namely health. They believed that they were helping society by voluntarily investing time and effort, which they could also do in other ways. They compared their contribution of personal data to Lifelines to a gift bequeathed to a charity or to organ donation. For example, one participant (P33) explained: ‘My role is not to conduct research but to provide things [such as information, money, or data]’.
Ex-participants emphasized that the central motive for their initial participation in Lifelines was their desire to contribute to society. According to them, the purpose of research was to ‘gain insights’ and to ‘create innovation in society’. Therefore, in their view, participation would facilitate societal progress. An ex-participant (EP28) explained this as follows: ‘There was at that time no reason to say “no”. It was about gaining collective insights into the world; you need people and you need a research group’.
This perception of contributing to societal progress was fostered through the awareness that Lifelines is a prospective cohort and a large-scale, centralized data repository. Ex-participants argued that the scale and length of the Lifelines data collection was unique and could thus provide new insights for medical sciences in the long term. Their initial expectations were that the results and implications of the research conducted using Lifelines data would primarily benefit future generations. These expectations were similar to those of the participants. Two participants explained this as follows:
I think I have little benefit, I don’t know. I think it’s for the generation after me, for which I’m participating in now. . . . My parents participated in such events for us, and so I am participating for the next generation. (P22).
Research must be useful for society as a whole [so] that we ultimately flourish or become less ill . . . so that things get better; so that we leave it better than we found it. It is that idealistic idea so to speak. (P1)
For the participants, the primary motive for participation was to contribute to science. Moreover, all of the participants and ex-participants subscribed to the belief that participation would or could facilitate scientific progress and specifically the progress of the medical sciences. Participants as well as ex-participants explicitly stated that they highly valued scientific research in general. Participants were primarily interested in improving health and medical knowledge because they prioritized health as a profoundly important value. They perceived their donations of personal data as contributions to health-related research that was aimed at facilitating a better understanding of the development and course of illnesses. One participant (P22) expressed the view that ‘the medical sciences can’t stagnate, so you must cooperate in order to help people to do research and make it better. . . . That is what my aim is’.
Participation to Help Family Members or Friends
Similarly, a motive for participation mentioned by the interviewees, especially ex-participants, was ‘helping family or friends’, which was described as an investment of time and effort to benefit the current generation of family members or friends. They perceived this as an important motive influencing their decision to participate. An ex-participant (EP27) made the following statement:
As I recall, I participated because a family member participated too. It was probably my mother, but I am not sure. . . . We spoke about the (Lifelines) research on health and diseases at that time. However, exactly how that went I don’t recall because of the passage of time. I started participating after that conversation.
Several current Lifelines participants who were recruited by their friends or family members considered participation in the programme to be almost self-evident, given the objective of Lifelines to follow the trajectories of three generations. A participant (P18) explained this as follows:
Well, we have two daughters; one daughter took part in it and so did her son. So, I thought, “then someone from our generation will have to participate too”, so that they will have someone of my generation and get three generations in total. My husband didn’t want to participate, so I joined.
Contributing to Obtain Individual Benefits
The prospect of a ‘medical check-up’ was also a motivating factor for the contributions of ex-participants. Once every five years, participants visit a Lifelines location, where they provide blood samples and are subjected to physical measurements (e.g., those relating to anthropometry, electrocardiogram, and spirometry). Afterwards, some of these measurements are returned to the participants. Interviewees perceived this feedback as a free medical check-up that provided them with extra health-related information. These same results also sent to the general practitioner (GP) with a recommendation on whether the GP should actively contact the participant to arrange further clinical investigations.
Although participants highly appreciated this sharing of data, which they valued as a supplementary bonus to their personal healthcare, most of them emphasized that it was not the primary motive for their participation. They valued some of the other individual benefits as well, such as ‘acquiring knowledge in general’, ‘learning about themselves’, and ‘the joy of gaining insights into the scientific process’. Despite the fact that all of the participants were informed that not all of the measured data would be returned and that the collected data would not be screened for diseases, they felt that the chances of obtaining an early diagnosis of illness would increase through their participation in the programme. They also assumed that they were free of any illness if their GPs did not recommend further investigations. One participant (P19) noted:
I do like it. Suppose I am not in good health; it is of course out of self-interest as well, to find out at the earliest possible stage. Look, normally if you don’t have anything, then you don’t go to a doctor. Nevertheless, here an EEG is done, your blood is measured, your urine is measured, and other things are done. So if there is something wrong . . . then hopefully you will know at an early stage. So, that is also one of the reasons for me [to participate].
A few participants thought that their own data could prove useful if they were later to fall ill. Participation would therefore enable them to keep records of their personal health. For example, according to one participant (P11), ‘it is a sort of back up. We [my GP and I] can look into the past, if I feel ill or have some symptoms. Perhaps I [my GP and I] can use it?’ Applying this line of reasoning, some of the participants specifically observed that their participation and procurement of data could provide their offspring with extra health-related information.
Not Contributing to a Public Good
Prior to their withdrawal from the programme, ex-participants considered the large-scale, centralized data repository to be a public good. However, this positive perception later changed to suspicion, as they felt that their personal data would be sold or misused. The new perception was driven by sceptical news items, negative perceptions of family members and friends, or a negative experience during a research visit. They mentioned that their concerns about the data repository being used by insurance companies or by the government to exclude people collectively and individually were among the primary reasons why they withdrew from the Lifelines programme. Another reason pertained to their belief that Lifelines was a profit-oriented organization and, therefore, their participation did not contribute to a public good.
Non-participants also considered the risk of collective exclusion with Lifelines to be plausible. For example, they noted the effect of personalized information on insurance premiums that could derogate a ‘social society’. Some of the non-participants pointed to historical evidence of the isolation and exclusion of social groups resulting from the misuse of comparable repositories or systems. One non-participant (NP36) specifically referred to the civilian administrative system that prevailed in the Netherlands prior to and during World War II: ‘… they used to register the religions of civilians. That is not done any more for good reasons. These practices originate from World War II and the [treatment of the] Jews. Those [data] were used to trace them’.
Similar to ex-participants, non-participants generally thought that their participation in large-scale, centralized data repositories could prompt a decrease in life opportunities for themselves and others through decisions on, for example, mortgages or governmental support. One non-participant (NP6) elaborated on this point as follows:
Well look, if it [the data] is linked to healthcare insurance, they could potentially determine from this information that this male or female has a risk that is above average. Therefore, they may ask for a higher premium or deny the individual insurance. That is . . . I perceive it as a definite risk and threat if such organizations are involved.
Differing from ex-participants, however, non-participants ranked the type of research compiled for population-based biobanks lower than other types of research in terms of its importance. Several non-participants were not particularly concerned about health research, showing considerably more interest in topics relating to economics or energy-related innovations. Although they saw some use for research facilitated by Lifelines data, they did not feel that contributing their personal data would be of much use, as a non-participant (NP20) explained:
I don’t necessarily perceive it [as being] negative; nor do I immediately think: “oh yes, I am going to participate”. I think that it depends very much on . . . as you explained it now, it [research participation] doesn’t attract me. I don't think: “oh yes I have to participate, because I can be of use” or something like that.
A Lack of Individual Benefits
Ex-participants explained that one of the reasons for their withdrawal was that they did not perceive their participation as being useful in terms of procuring personal benefits that matched their expectations. They discovered that participants could still become ill regardless of their participation in Lifelines, indicating a lack of individual benefit of a ‘medical check-up’. Although non-participants also considered potential individual benefits such as a ‘medical check-up’ or gaining ‘part of the profit’, they did not especially value or see the individual benefits gained from participating in Lifelines. This lack of benefits for themselves did not motivate them to participate in the biobank. One non-participant (NP31) explained this as follows:
It must clearly matter in my view. For a multi-year research project, one can claim that it is of use. Of course, it is of some use. However, it is difficult to grasp how long it will [continue to] be of use. . . . Of course, if so much data is compared, your data will disappear in a large dataset. . . . Then you get research results from which you must filter out the personal implications. In that sense, for the larger group, it is wonderful that many people are participating. Nevertheless, at this point, I am not interested in participating for this reason [lack of individual benefit].
Whereas some participants and ex-participants expressed the view that personal health experiences featured in their decision to participate in Lifelines, some of the non-participants explicitly stated that they had not had any immediate experiences relating to health issues themselves or within their families. Therefore, they did not perceive the active contribution of personal data as being imperative. As one non-participant (NP23) explained, ‘I don’t know any people with chronic diseases. . . . I need some personal benefit. I can imagine that with Lifelines, you get knowledge about your own health and body. So either that or I am helping someone within my circle’.
Moreover, non-participants mentioned that the burden of investing time for each visit, and for the duration of participation, and the effort expended in relation to the complexity of the performed tasks were also motives for their non-participation. Non-participants found it difficult to acquire an overview of these burdens or costs and of the implications of participating in a population-based biobank. Some of them were hesitant about participating because they were apprehensive about making a long-term commitment to such a project.