Decision-making and motivation

When donors considered participation in a biobank or biobank-related research study, they applied three different strategies regarding involvement of their family members in decision-making:

1. not to disclose the participation in a biobank to relatives because it was conceptualized as an individual choice and private information;

   Do you think that people who donate biological material containing genetic information should consult with their relatives or family?

   In general, I am a tight-lipped person, most likely I wouldn’t talk [about it]. Maybe if a conversation took a certain turn I’d let [them] know. I don’t know what I would do, maybe I would make an autonomous decision and not to share this decision. F_46

2. to inform relatives about their participation in a biobank or biobank-based study just to let them know about the decision;

   I didn’t discuss, I just told my mother that I have this [study], because it involves a diet and then you can’t eat what [your] mother gives you. Well, otherwise nothing, it was completely my decision and my family has never interfered in my business and my scientific activities. M_46

3. to discuss their potential participation in the biobank with relatives and make a decision together with them.

   Who helped [you] to decide?

   [My] family.

   So, you talked to [your] family?

   Of course. […] I have more or less responsibility also for them… as I am the children’s father. M_54

The choice to use one of these strategies can be linked to different reasons, circumstances and beliefs. In some cases, a decision whether to discuss participation in a biobank with relatives or not was linked to emotional closeness and quality of relationship. Sometimes, when the relatives were emotionally distanced or family members had different priorities or values (e.g. they did not trust the scientists), the donor decided not to disclose information about the donation of samples or participation in a study, even if the relationships were spatially close. In some cases, donors were not sure how relatives might respond or they were afraid that the response might be negative; therefore, they did not discuss the topic at all.

Did you discuss [donation] with your relatives?

No. Because they would say, “why is it needed?” and then start to talk me out [of it]. F_56

In situations where relationships were emotionally close, the interviewees more often let their relatives know about participation and discussed the decision to donate samples to a biobank or to participate in a study.

And was it important for you to discuss [donation] with relatives?

Yes, yes.

Why?

[…] it is a process involving me, and it is medicine—and nevertheless something is taken [from me] and removed. Anyway [they] should be informed. [My] wife had no objections, she is my partner, we are not officially married, but she had no objections. M_50

Another aspect impacting decisions to share and discuss information on donation to a biobank with relatives was spatial distance which may make communication between relatives less intensive. One of the interviewees explained that when she meets relatives they do not discuss all aspects of life, but only the most important, and that not may not include participation in a biobank and research studies.

How did your relatives perceive your choice to donate samples to the biobank?

[…] My relatives live in X [a regional city], I live in Riga. They… I don’t know, maybe I’ve mentioned something, but they don’t know about it in detail, I suppose. F_28

Some donors believed that their biological samples stored in a biobank will be inherited by relatives after their death. They expressed worries that this fact might cause problems in the future because it might be complicated and frustrating for their relatives to make any decisions regarding their biological samples. While, according to the law, this inheritance assumption is wrong, nevertheless it was mentioned as one of the reasons not to inform relatives about donating samples to a biobank.

[…] if we inform them [relatives], it makes them responsible to decide on behalf of the deceased on an issue about which they are not even aware. It could be hard for them; they might start to worry. F_43_M_40

Another important part of decision-making is motivation. Our interviewees mentioned various types of motivation for donation to a biobank, including progress of science, development of new medicines, and a way to find out information about themselves. In several cases, a donor’s motivation for participation in a biobank was clearly not based on considerations about benefits for the broader community or society; instead donors emphasized their considerations about personal benefits and benefits to relatives or friends. Some donors said that if donation of a biological sample would not help to find a better treatment for them personally, participation in a biobank might help their children or other family members. In particular, when interviewees were participating in a biobank-related study on a specific disease affecting a family member or friend, it was mainly conceptualized not as serving science in general, but as support for this particular person. Further, in interviews with professionals these mentioned that potential benefit for family members is an important motivation for potential donors.

Well… they [donors] are more motivated by the fact that it is for the future, that it is an investment in the future. […] It certainly does not harm him, but it can help his children or grandchildren. C_20

In some cases, relationships with a person was a reason for agreeing to donate or participate in a research study because a refusal might be viewed as a lack of support to the relative or friend. For example, one interviewee who herself was a biobank donor explained that the decision by her relatives to donate samples and to participate in a biobank-based study on diabetes was linked to her illness, and none of the family members refused to participate because they viewed participation in the study as manifestation of care.

I didn’t even hear from my relatives that anyone would object. As far I know, everyone took part [in the study]. They would disagree maybe only if they couldn’t get to the place—due to job, just for some other reason. Not because he doesn’t want to give [the biological sample], he just cannot give it. F_23

When speaking about motivation to participate in a biobank, relatedness and relationships become visible also in other forms. In two cases, female interviewees admitted that participation in a biobank-related study together with their partners was an adventure. In one of these cases it was also viewed as a good opportunity to do tests for the husband’s medical condition and to motivate him to see a doctor. In another case a female interviewee admitted that she decided to participate in a biobank-based study to find out whether the arthritis both she and her mother have is an acquired or inherited disease:

I wanted to know. I can’t afford genetic tests. […] my mom and I have arthritis, I wanted to know how to confirm if it’s inherited or developed during my lifetime. F_56

In some other cases, relationships manifested in the process of decision-making about donation as a motivation to support a relative or friend who is a researcher or biobank staff member. Some interviewees indicated that they themselves or their relatives knew people working in a biobank, and donation of samples and personal data was meant as support for this related person.

I don’t know, X [a biobank employee] called me, I know her since she wrote her Master’s thesis. I know her, and then my son told me that it needs to be done—mum, you can do it. Well, then I agreed. F_63

In this case the mutual acquaintance and history of relationships were viewed as the basis for trust and motivation to participate in a biobank, and the invitation was based on a personal request. In donor interviews cases were also mentioned where the invited person not only participated in research and donated samples to the biobank, but also engaged in recruiting more donors by inviting his or her acquaintances, colleagues or family members.

Sharing relatives’ health-related data for research purposes

When donating biological samples and personal data for a biobank, donors are sometimes asked about hereditary diseases, health status and for other as about the health of their relatives. Sharing information about relatives’ health with biobanks was discussed both in donor interviews and in interviews with researchers and clinicians. In donor interviews we asked questions about donors’ readiness to share this kind of information with a biobank to find out what donors’ arguments pro and contra such practices are and what ethical issues they might identify. Most of the donors reported their personal experience from interaction with researchers.

When they spoke with you, were questions about your family included?

Well, the questionnaire was quite large, including the family and everything, because there were about 200 questions, if I’m not mistaken, about health, relatives and other things. M_68

Most of the interviewees did not consider sharing of information about their relatives with a biobank to be an ethical problem, since genetic information is shared in its very nature, and information about health issues and illnesses is often discussed among relatives anyway. Only two of the interviewees said they would not share any information about living relatives, in order to respect their privacy:

Only [information] about myself and nothing more. When it comes to inheritance, then about ancestors, but I respect the personal space of my relatives. I am ready [to tell] about myself, but about others, [researchers] should talk with them. I wouldn’t like to involve them. M_68

Donors who stated that they would share information on their relatives often admitted that they would not ask for consent from them before sharing information on their health. Most did not see this as an ethical problem; however, some interviewees reflected on how the requirements on personal data protection and the principle of autonomy might be applicable in this context.

All I thought about was what the relatives or the distant relatives would say about the fact that I had made such information public. My sister…

Did you ask their permission?

I did not ask my sister, but I asked my mother a question about her illnesses and age [when the illnesses started]. We didn’t really discuss it. But I suppose that my relatives would not mind. F_43_M_40

In most of the interviews, donors expressed the view that relatives would not object to sharing their health information with a biobank and researchers. Some interviewees believed that they have a right to share such information if they do not mention a relative’s name as in this way they keep confidentiality and information may be considered anonymous.

Yes, I would provide [the information] as much as needed. For example, if it’s all confidential and I don’t have to reveal the names and surnames of my relatives […] then why not?

So, one may tell about relatives without identifying them?

Yes, exactly, why not? However, in fact, if you know my identity, you can probably find out all [the identities of relatives], but well… But well, if it is needed for science then I would probably provide as much information as is necessary. F_23

In the interviews, researchers and clinicians recognized the importance of information on the health of donors’ relatives but admitted that collecting personal information on donor’s relatives might be problematic because of personal data protection requirements.

What do you think, how much should be asked about relatives?

Well, [donors] should be asked at least about their first-degree relatives: have they had any kind of diseases that might be inherited? C_17

In some donor interviews, a breach of confidentiality was perceived by donors as a potential risk to their family.

I wouldn’t want it to appear in a newspaper–that family has the following hereditary illnesses. F_43_M_40

Donors and professionals viewed confidentiality and data security as essential tools for addressing various privacy risks, not only for donors themselves but also for their relatives; however, there was a lack of clarity in how to apply these tools when dealing with information about a relative’s health. Several researchers mentioned that, in their view, the information which is collected about donor’s relatives is not identifiable because the name of the relatives is not asked.

We will not identify relatives and who they are. SR_12

Some researchers said that there is sense in collecting information on relatives only in cases where genetic analysis is carried out. At the same time, other researchers expressed the view that the more information on donors’ relatives collected from a donor in any type of research the better. They hold the view that also lifestyle information on donors’ relatives and various socio-economic aspects may help to analyze, understand and interpret results of testing of biological samples. However, one of the possible problems mentioned by researchers and clinicians was the donor’s lack of knowledge about their relatives.

For example, in our routine questionnaires we ask whether their relatives, like their father’s mother, their mother’s mother, and so on, have had cardiovascular diseases, different types of cancer, other problems, since it is such essential information, and well, not everyone can answer such in-depth questions, for example, I couldn’t answer what significant problems my relatives have had, I assume I’m not the only one. R_10

Several researchers emphasized that in any case the information provided by donors on their relatives is not fully reliable and quality of data might be questionable.

Sharing research results with relatives

We asked all interviewees several questions on the management of incidental findings and returning of research results, including those findings which might be meaningful and important for donors’ relatives. The interviewees had different ideas on how incidental findings and research results should be returned. Some donors believed that their moral obligation is to share the results and incidental findings with relatives. They emphasized that this knowledge might help prevent health problems for members of their family in the future, e.g. to avoid diabetes by changing lifestyle and diet and by starting necessary treatment.

You said that you discussed the results with your daughter, what did she change in her life?

Well, […] like me she also has a tendency for being overweight. My mother who was my height was 80 [kg], I am 65 kg and I’ve been told to lose weight. And I knew from my mom also that I have a tendency for diabetes. […]

Is there anything your daughter is going to change?

She is on a diet all the time, because she has [got] a tendency for being overweight not only from my side, but also from the other. F_62

Some donors were not sure how their relatives would perceive this type of information and whether their relatives would be willing to know it at all. In one case, the donor believed that it would be unethical for biobanks to share genetic information that would allow finding out from whom the person has inherited a disease because it could lead to the blaming of relatives. Some donors mentioned that the fact that a condition is treatable might be crucial in deciding about sharing research results or incidental findings.

Well, for a young child it is possible then to do gene sequencing to know if it [the disease] will be inherited […] Well, maybe about those [diseases] which can be treated there is a need to know, but about those which can’t be treated–no. F_56

Researchers and clinicians mainly shared the view that they do not have the right to inform donor’s relatives about incidental findings and research results.

In fact, the relative has not given us the right to contact him. In my view, we may only inform the person with whom we have initially met. Well, but that information… To some extent, it would be ethically right if it reached the relative. SR_12

Some researchers and clinicians recognized the importance of informing relatives about incidental findings and research results, but they also pointed to possible ethical challenges that could arise. At least two experts believed that genetic information poses a risk in uncovering “family secrets”, e.g. information about biological parents.

And then the researchers and scientists get into a dilemma how to tell it all, whether they have to tell it, whether they may say it and to what extent, and who will be responsible for disclosure of the information. Because then the other person can sue you.

Who exactly?

Well, for example, the woman–a mother who has been unfaithful to her husband. P_14

In this context, an unanswered question for professionals was also how to exercise relatives’ rights not to know about potential diseases or genetic risks that could affect them. Even in cases where a donor has given their informed consent to receive information on incidental findings, there is usually no consent given by the donor’s relatives. At the same time, some researchers and clinicians held the view that incidental findings that may seriously impact the health of donors’ relatives must be reported to them, especially if the risk is high.

If we clearly understand that this mutation is a very high-risk mutation leading to development of aortic aneurysm, and this is a hereditary mutation, the young man is at very high risk of tearing his aorta by the age of 30, and he knows nothing about it and likes extreme sports, I think it is a life-changing decision that he can take at that moment. […] These are very individual and very specific cases of course, but it can happen from time to time. R_16

Often researchers and clinicians did not have any idea of how it would be possible to inform donors’ relatives about incidental findings because they do not have their consent and contact information. This is why some said they would inform the donor and ask him/her to inform relatives.

[…] and then there is a question of whether a group of relatives should be informed?

I think it is necessary to inform the individual who is involved in the study, from whom the samples are taken. And it’s up to him whether to reveal to others. […] It’s his responsibility. He would also bear some criminal liability and other kinds of responsibility if, for example, a person dies, because of ignorance, because he has not been informed. P_14

It was also mentioned that putting responsibility for sharing information with relatives onto the donor may lead to practical problems, especially if their relationships with relatives are not good.