We distinguished two main themes relating to the decision making experience of the clinical biobank donors. One theme pertained to the informed consent process and the circumstances of the donor decision-making, the other - to biobank donation motivators and deterrents.
I. Informed consent
II. and the circumstances of the donor decision-making
The information on the opportunity for biobank donation was provided to patients by the doctor in charge of their case, and, in other cases, by the medical staff of medical institutions, where potential donors were having inpatient treatment.
All but one of the donors confirmed that they were offered an informed consent form. In most cases (7 out of 13), patients read the document on their own, five patients reported that their consent was read out orally by a medical specialist. It should be noted that, sometimes, patients claimed they examined the printed document cursorily and were inattentive. Various factors can affect the way a patient examines the document — these include personal factors (e.g., a developed approach to working with documents and contracts), and situational ones. Cursory reading was reported by those patients who had to sign many treatment-related documents during their treatment consultation (in- and out-patients)— and those documents were usually associated with more serious risks.
"I don't particularly read the documents recently, I read selectively what is written there as there was too much information to read," (No. 3).
"I read when I signed it, but I didn't pay attention to the information itself". "I had a lot of documents on treatment and something else," (No. 13).
In some cases, the informed consent on biobank donation was examined together with the discussion of other medical procedures.
"While discussing a surgical procedure, a caesarean section, we discussed other topics and spoke about documents" (No. 1).
Also, a donor's physical condition was an additional factor that affected how detailed they studied the informed consent form:
"while being in reanimation would you read the informed consent? - I had such a condition..." (No. 10).
Donation organisers also confirmed that patients often do not read the informed consent form.
Most of the informants remembered that the signing of informed consent itself preceded the donation. However, two donors (a woman in labour and a patient with multiple sclerosis) found it difficult to remember whether they had signed the informed consent form, and three donors (all belonging to the nosological group of women in labour) said they did not sign the informed consent form.
The informants noted that, when they got acquainted with the informed consent, they either understood everything, or they did not want to go into details. Most patients (9 out of 13) did not have questions after examining the informed consent form. Should patients have questions, they were directed to the medical staff of medical institutions; the answers of the specialists satisfied all the donors. The questions regarded either the type of the collected material, the possibility of being a donor with a particular disease in the past (hepatitis in childhood), and clarifications of who would be a donor—a mother or child (in the nosological group of pregnant women). The questions which donors asked were also related to the research and the project under which it was conducted.
The most common emotional reactions of donors, to the proposal to donate the biomaterial, were calm and indifference — eight respondents indicated thus.
"I treat it consciously, calmly, without any emotions," (No. 13).
Two donors noted that they felt interested.
Fears or hesitations were uncommon for patients, at the moment of deciding to become a donor. Only three donors mentioned them. Hesitations were associated with the childhood illness (hepatitis), which, according to the patient, could prevent her from donation, with fear of making a mistake that a newborn child should become a donor, fear of finding out bad news upon the medical examination results.
The time taken to decide to donate, for most donors, ranged from a few seconds to 15 minutes. Only one patient decided on donation, taking a full day. One of the patients (a woman with multiple sclerosis) associated the long time required by her, to decide on donation, with her hesitations and fears of the upcoming testing and its results.
"they simply said, I would undergo a medical examination, and I thought I hardly needed it. Do I really need to find out bad news? - I'd rather not know it" (No. 12).
In one case, a respondent said that she decided, in advance, to become a stem cell donor, and the proposal to become a biobank donor seemed, to her, a suitable replacement.
"When I give birth to a child, I need to call somewhere, I want them to take my placenta ... because when I came here in (name of the Institute) for an open-door day, there were representatives of (name of the Cell Bank). ... at that moment I decided I would be a donor", (No. 1).
While deciding on biobank donation, slightly less than half of donors (five respondents) sought advice. All respondents who sought advice were women (four women in labour and one woman diagnosed with multiple sclerosis) and they consulted their husbands.
"At that moment my husband was with me, he also agreed, I could say we made the decision together," (No. 2).
We can assume that, since any medical manipulation can be associated with a potential risk for the child, most pregnant women considered it important to take a shared decision with the future father and, perhaps, to share responsibility. A patient with multiple sclerosis consulted her husband, who is a medical practitioner, trusting his professional opinion. In cases where family members were nearby, taking advice did not require additional efforts from donors.
"Often people come to us with family members, we discuss this in the presence of family members. Sometimes family members make a decision for the patient, they say "you need it, participate" (DO 2).
Process and circumstances of donation. Biobank donors of the gynaecological profile did not always clearly differentiate between the types of material taken. While donors diagnosed with myocardial infarction and multiple sclerosis clearly spoke about blood donation, almost all donors of the gynaecological profile reported donation of the umbilical cord and/or placenta, while one donor reported donation of the afterbirth (No. 9).
"Honestly, I don't remember. I just said, take it if you need it. A peace of placenta, venous blood, I think they took something from the cord ... Is it bad that I don't remember?" (No. 7).
"I remember they took a piece of placenta and a piece of cord... I'm not sure about the blood," (No. 1).
According to donation organisers, they collected maternal venous blood, umbilical cord venous blood and placental tissue from women with complicated pregnancies.
One cardiological profile donor in this study had negative service experience. This donor expressed his dissatisfaction regarding the process of blood drawing, referring to the nurses' incompetence and lack of expertise.
"Nurses there can't take your blood right, I had bruises everywhere, you know, both here and there. It was the only thing I didn't like. Both my arms were ruined. I also had to get shots later, but there was simply no place left," (No. 10).
Other donors did not express any dissatisfaction regarding the process of donation.
"No incidents, nothing, everything was on point," (No. 5).
Awareness of the biobank purpose. Although most donors (n = 8) pointed out that the purpose of a biobank is to store biological material for scientific research, donors often do not understand the purpose of this research.
"I didn't think about it, I didn't ask. I think they are going to do some research... I still don't understand why they had to do it. I don't know what they are going to do next, or what for," (No. 3).
"Someone needs it for their thesis," (No. 9).
Clinical biobank donors do not always differentiate the research goal from the goal of providing direct help to a specific person in need of donor blood or an organ.
"When something happens to a person and they need to find a donor quickly, first of all they turn to this biobank," (No. 1).
"Q: So you think this biological material can be useful to somebody?
A: Yes, I hope it can. I mean, I hope nobody will need it, but if one day someone does, it will be great to know that it was useful and it happened to be at the right time at the right place," (No. 1).
"I guess it's that place where they store all this for several years and then use it for other people ... they use cord blood for treatment of some forms of cancer, there were many successful surgeries," (No. 6).
Considering the positive connotation of the term, donation, (as in blood donation) in Russian culture, one patient called donation to a biobank "passive donation", since it does not result in saving lives directly.
"We are not talking about saving lives here ... it's some kind of passive donation," (No. 7).
Awareness of the potential risks. Nearly all biobank donors clearly stated their opinion that biobank donation is not associated with any risks.
"I'm not concerned about the process, in fact. It doesn't hurt, you don't lose anything," (No. 8).
Only one respondent expressed certain concerns about the risks associated with the process of taking the biological material but not with its storage.
"What if I get infected? I also thought about it, actually," (No. 3).
The donation organisers that we interviewed see donation to the biobank as not being associated with significant risks; on the contrary, they believe it to bring benefits that might result from additional health checks.
II. Biobank donation motivators
The majority of the patients had not previously considered becoming donors; they made a spontaneous decision and, therefore, found it difficult to identify any predominant motivation.
"Q: What was the main reason you agreed to donate your biological material for research purposes? A: No reason, I just agreed, that's it... It was purely spontaneous," (No. 10).
"There was no special reason. They offered to do it and I agreed," (No. 11).
The donors who mentioned the presence of intrinsic motivation most often cited certain forms of prosocial motivations; moreover, the respondents frequently mentioned several co-existing motives without distinguishing between them. Altruism (desire to help other people) and collectivism (desire to help the community) were the most frequently reported motivations for donation:
"If I don't need it, maybe someone else will ... I'll do a good thing for somebody," (No. 1).
"Why not ... if it is beneficial to society," (No. 1).
"Besides, it may help people find out how to fight this disease," (No. 3).
In some cases, respondents indicated that either science or the healthcare system are the main beneficiary of their donation:
"It will help to develop our healthcare ... I don't mind if it's useful for some research," (No. 2).
"It’s useful, it helps to develop science ... why not contribute to the development ...“ (No. 9).
One donor also indicated that she had donated because she perceived a need for such service:
“You always see messages like ‘Help save this child,’ ‘Save this child!’ ... When you see mothers who face such a problem, you start praying that the same doesn’t happen to your family. And if you can do something to prevent it, then why not,” (No. 1).
Indirect reciprocity, defined as a “response to or anticipation of an act in kind by a third party”, was also a commonly cited motivator of donation behaviour. One donor indicated that she had donated out of gratitude (upstream reciprocity) after her family member and she, herself, had received medical treatment or lost their loved ones:
“If I can help someone, I will do it with great pleasure, because I know how hard it is to lose your loved ones ... My son also has a severe heart defect, he had undergone surgery,” (No. 13).
Some donors indicated that their donation behaviour was encouraged by other sources of intrinsic motivation. In particular, they cited feeling good about themselves (i.e., to enhance their self-esteem) after donation:
“I even thought, later, what a good thing I’d done,” (No. 7).
“There was awareness that I contributed to the development of science,” (No. 2).
And they were satisfying their curiosity about the donation process (i.e., an impulse to investigate, observe, or gather information, particularly when the experience is novel or interesting):
“I’m always curious to try something new,” (No. 1).
“I am always ready for new experiences,” (No. 3).
Two donors indicated personal values as their motivation to donate:
“This is such a noble goal that few people would give up,” (No. 2).
“I had already made a decision that I would become a donor in any case,” (No. 1).
The donation organisers that we interviewed also mentioned moral obligation (as a kind of personal value according to T.C. Bednall and L.L. Bove classification [25]), to participate in research for patients receiving medical aid in organisations which have a status of “research institute”.
A relatively small number of donors (n = 4) reported donating because of perceived social norms.
Even though donation to a biobank is a relatively new social phenomenon, respondents could relate it to a broader range of actions classified as prosocial behaviour. Thus, several donors were motivated to donate because blood donation was widespread among their friends and/or family:
“My friends and relatives ... they donate blood regularly ... I can’t be a blood donor but at least my pregnancy could help someone,” (No. 1).
“My father has received an award for being a blood donor for many years, and my cousin too,” (No. 3).
Donors indicated that they were encouraged to donate by other significant people or felt social pressure to donate (subjective norms).
“I was talking to my sister ... she said it (blood) replaces itself,” (No. 3).
“Everyone tells me, ‘You did the right thing!’ ” (No. 5).
“My husband is a physicist, he also studies medicine and he understands all this ... My husband is a scientist, he has been doing research all his life, he probably needs it, so I believe him,” (No. 12).
The study results allowed us to identify two categories of motives that were not included in the list proposed by T.C. Bednall and L.L. Bove [25]. They are unwanted / low-value gifts and the level of trust in healthcare and a particular physician.
Five donors summarised their motive for making a donation in a sentence “I don’t need it.” In cases where pregnant women donated their placental tissue, they could perceive it as “waste material” of no particular significance [15] which is removed during medical interventions and usually disposed of.
Thus, donation to a biobank may be perceived as obtaining additional benefits for someone without any additional costs to oneself.
“You don’t need it anyway. You will throw it away otherwise,” (No. 1).
“I just don’t need it ... if someone needs this material, let them take it,” (No. 6).
In some cases, a high level of trust in biomedical research, healthcare, and particular physicians can encourage people to decide to become biobank donors. Patients delegate to their doctor the duty to analyse data about the importance and safety of the biobank donation and make a positive decision based on this analysis and the level of trust in their doctor.
“I understood that they were going to use it for some good purpose, it was enough for me because I trust my doctor,” (No. 1).
“I believe they won’t deceive me, they won’t remove my organs or anything,” (No. 3).
“I decided to give them a chance, I just thought I could trust them,” (No. 7).
Several respondents (n = 3) answered the question about motivation, saying the same phrase: “if it has to be done, it has to be done”. In Russian, it is a set expression that can be explained as a willingness to comply with some external requirements or requests without delving deeper into the matter.
Incentives. Biobank donors mostly stated that they had received no rewards or direct benefits in the form of financial rewards, time off work or gift items for making donations:
“They told me at the very beginning, there are no benefits... the doctor warned me there would be no compensation, no incentives at all,” (No. 5).
“I think no, I understood it was a voluntary donation without any incentives,” (No. 6).
However, some of the biobank donors either found it difficult to answer the question about incentives or pointed out some benefits for themselves, mainly in the form of health checks that are free and not time-consuming.
“A full check-up ... I wouldn’t have done a check-up myself otherwise,” (No. 4).
“... to do a full check-up. It’s rather expensive nowadays ... And they told me it was free there ... to examine my health ... just for myself ... It would be stupid to refuse,” (No. 5).
The donation organisers express the same attitude and framed the check incentive as a unique opportunity people should not miss.
“the biobank donation was exclusively a benefit and privilege for them. Elsewhere, they would not have received the full range of examinations. Doesn't want - don't need – next,” (DO2).
“they receive a complete medical examination that they would not have received in life,” (DO3).
One donor indicated perceived health benefits—a belief that blood donation will provide positive health effects.
“When you donate blood, it replaces itself later. It’s good for your health,” (No. 3).
Interest in the research results. Most donors who answered the question “Do you want to know how your samples and information are being used?” expressed their interest in obtaining the results of the research.
“I think everyone is interested. I’d like to know,” (No. 3).
Nevertheless, patients demonstrated rather moderate interest in receiving feedback on the results of their participation in the biobank.
“I don’t want to impose myself... What’s there?” (No. 2).
“It would be interesting but it’s not my area of expertise, so I probably won’t understand anything,” (No. 9).
“I think they include this information into your medical history and your physician reads it later,” (No. 5).
“As for now, it is still being developed, I think. I don’t know what they are going to do next,” (No. 6).
“It was more important to me to have a healthy baby,” (No. 7).
It should be noted that some donors emphasised that they were interested in obtaining only their results, rather than results concerning other people.
“My results, not someone else’s,” (No. 12).
“I’d like to know about my blood values,” (No. 11).
It was the lack of personalised data that patients used as the main reason for not being interested in obtaining research results.
“What kind of results? Why should I be interested in this? Why are heart attacks more common in people with brown eyes than in people with blue eyes?” (No. 10).
One respondent indicated that he had become interested in research results long after making the decision on becoming a donor and the donation itself.
“But now I’ve started asking questions like, ‘What is the purpose of all this? What is going to come out of it?’ ” (No. 3).