Recoding the gift relationship: views on introducing genomic testing to blood donation

Abstract

This study examines how the institutional context informs the ways in which healthy recipients relate to genomic information. Through focus group data, it considers the trend of blood collection agencies (BCA) moving to extend donor genotyping. We investigated how receipt of genomic information is viewed as fitting into the contract of altruistic, voluntary blood donation by donors and non-donors. Our findings suggest that receipt of genomic health information is viewed as fitting the principles of this exchange with some limits. Participants considered the practical value of receiving different kinds of genetic information for individual and collective health from the perspectives of a healthy, altruistic donor, an “entrepreneurial self” and a potential patient. Findings identify the importance of considering the ethics of providing information on genomic markers to blood donors without current clinical value, as well as the impact of providing this information on the donor – BCA relationship.

Keywords:

• Blood donors
• genomics
• gift
• institutional context
• altruism

Introduction

Background

Blood collection agencies (BCAs) conduct genotyping on donor blood to better match blood to patients (Hirani et al. 2021; Avent 2009) but have not traditionally routinely genotyped large numbers of donors due to costs and limitations of DNA-based methods (Gleadall et al. 2020). Australian Red Cross Lifeblood (Lifeblood), the sole collector of blood in Australia, currently undertakes extended phenotyping on only 6% of donations and genotyping on 1% of donations per year. In many countries, including Australia, this means it can be difficult to provide sufficient matched blood for patients with rare or uncommon phenotypes with researchers estimating that 38% of all donors would need to be phenotyped or genotyped to meet demand (Hirani et al. 2021; Luken et al. 2022; Best et al. 2022; Tordon et al. 2023). The recent development of a high throughput blood donor genotyping platform by an international consortium will, when implemented into routine business practice, enable BCAs to genotype more donors at a lower cost, leading to benefits such as increased availability of extensively typed units, identifying more donors with rare blood types, and better matching of donor blood to patients (Gleadall et al. 2020; Luken et al. 2022).

In addition to using genotyping to better match blood to patients, BCAs and researchers apply genomic technologies to advance knowledge of donor health and with the goal of informing a more personalized approach to donor selection and management (Burgdorf et al. 2015). For example, researchers are investigating genetic variations implicated in iron metabolism to identify donors who may be more, or less, susceptible to iron deficiency. The goal of this is to suggest different donation intervals to avoid donors developing iron deficiency (Timmer et al. 2021; Ji et al. 2018). BCAs in many countries including Denmark, Finland and more recently Australia, have established blood donor biobanks or cohorts that seek additional blood samples and information from donors to undertake research both related to blood donation (such as iron storage) and related more broadly to health (Burgdorf et al. 2015; Hansen et al. 2019; Karki et al. 2021; Toivonen et al. 2022; Germain et al. 2023).

With these shifts toward genotyping more donors and inviting blood donors to participate in research biobanks questions arise about how to handle individual results that are detected. These may include markers closely-related to blood donation such as diseases associated with certain phenotypes, markers related to donor health, such as variants associated with hemochromatosis and sickle-cell anemia (Gleadall et al. 2020; Luken et al. 2022), or, if a genome-wide-typing array was used, as is used in a research capacity for donors enrolled in biobanks, markers for disease pre-disposition could be detected (Hansen et al. 2019). BCAs currently do not consider it desirable to test for, or provide information unrelated to blood donation to donors, limiting the scope of genotyping arrays to donor-related content. However, BCAs could conduct broader genotyping of donor blood and return this information to donors (Gleadall et al. 2020; Luken et al. 2022).

In this paper we examine stakeholder views on conducting genomic testing and returning individual genomic results to blood donors. We do this by considering the blood donor-organization contract and the institutional context of blood collection within healthcare systems.

Institutional approaches

Blood donation is widely positioned as gift given by altruistic individuals with no expectation of direct benefits or returns for them and as an act of solidarity that relies on many people to donate regularly for the benefits of others (Titmuss 1970; Pfeffer and Laws 2006; Snell, Tarkkala, and Tupasela 2021). In contrast, an institutional approach draws attention to how the way blood is collected, distributed and embedded in healthcare systems shapes who donates blood in different locations, and what donation means to donors (Healy 2006; Gorleer, Bracke, and Hustinx 2023). For example, Titmuss argued that voluntary non-remunerated donation situated within a national health service, such as in the UK, provided the opportunity for people to behave altruistically through enabling them to choose to give blood to strangers (Titmuss 1970).

Drawing upon European Union data, Healy demonstrated that donor characteristics, the likelihood of having ever donated and of becoming a repeat donor differed between the type of blood collection regime – whether it be state-run, run by the Red Cross or by blood banks (Healy 2000; 2006). More recently, Gorleer, Bracke, and Hustinxet al (2023) found that donation rates varied across Europe according to whether single or multiple organizations were responsible for the collection and supply of blood, and whether they competed or collaborated with each other.

Based on Healy’s analysis, as a division of the Australian Red Cross Society, Lifeblood would be expected to attract a comparatively smaller but more regular donor base, where level of education and income are weaker predictors, and donors are more likely to know transfusion recipients (Healy 2000; 2006). Considering the broader context in which the organization is embedded, Lifeblood operates separately from the humanitarian arm of the Red Cross, is the sole BCA in Australia and is funded by Australian Governments to provide blood and blood products to hospitals, meaning that it operates nationally, and is able to conduct nation-wide marketing campaigns to recruit and retain donors (Gorleer, Bracke, and Hustinx 2023). The Australian healthcare system is a hybrid model, similar to those of France, Belgium and Canada, in that all citizens have access to public insurance and can purchase optional private insurance (Dixit and Sambasivan 2018). Public health insurance is funded through tax dollars.

Healy argues that the success of BCAs in recruiting volunteer donors requires the organization to provide “scripts” for voluntary blood donation that position it as an act of altruism, and that the public has a say in whether these narratives appear morally relevant in terms of their experiences of donation (Healy 2006, 131). Research on donation during Covid-19 demonstrates that Australians held high levels of trust in Lifeblood, and this contributed to them continuing to donate during this time of uncertainty (Masser, Hyde, and Ferguson 2020; Haw, Thorpe, and Holloway 2022). We expect that these characteristics of the organization including the Red Cross affiliation and associated trust, the national reach and the lack of competitor, will influence stakeholder perspectives on genomic testing of donor blood.

Donor-focussed approaches

From the donor perspective scholars have demonstrated how systems of voluntary non-remunerated blood donation rely on implicit agreements between donors and BCAs about their respective roles (Pfeffer and Laws 2006; Dalsgaard 2007; Busby 2010; Cohn 2016). These studies position blood donation as a reciprocal process in which donors give this “gift”, as it is framed by the BCAs, for recipients with the expectation that blood will be available for them and others should they need it, and from which they will receive benefits such as care from staff and post-donation snacks. Further, donors hold expectations of what their blood will and won’t be used for, such as who should be able to use the blood and where it should be used (Busby 2010). Studies also indicate that donors perceive specific benefits from receiving information about their health through donation. Health screening, such as blood pressure and hemoglobin checks are a routine aspect of establishing eligibility to donate. Research suggests that donors value knowledge of their healthy donor status and acceptance of their blood (Busby 2010; Dalsgaard 2007), and that compared with non-donors, donors represent a group who are particularly interested in receiving health information as evidence of their health and ability to help others through donating (Alessandrini, Carr, and Coghlanet al 2007; Dalsgaard 2007). Recently, some BCAs have introduced additional health screening, such as cholesterol readings, and health checks as incentives to donate (Leipnitz et al. 2018). While not testing health-related incentives, research suggests the normative environment for tolerance for incentives influences whether the offer of those incentives will lead to an increased likelihood of donating blood (Graf et al. 2023). Return of individual genomic results to blood donors differs from other health-type information collected by BCAs because these kinds of results will only be returned if a positive finding is identified. Further, unlike data obtained from routine pre-donation checks, individual genomic results may not be health affirming and therefore may challenge donors' identities as healthy (Busby 2010; Dalsgaard 2007).

As BCAs evolve their activities by establishing biobanks and undertaking genetic and health-related research, it is important to consider the perspectives of both current and future donors on BCAs conducting these activities, and their willingness to participate in them (Busby 2004; Mitchell 2010; Cohn 2016; Raivola et al. 2019). Despite overall success in recruiting blood donor participants, willingness to participate in genetic research and in biobanks differs by demographic characteristics including age, gender, and level of education (Scott et al. 2010; Rice et al. 2010; Middleton et al. 2020). Studies have shown that donors perceive the value of participating in these activities differently to blood donation, questioning who the beneficiaries of biobanks and research donations are, the timeframe of research outcomes, and expressing concerns relating to the privacy of genetic data collected and stored by a blood bank (Mitchell 2010; Rice et al. 2010). In the UK context, Cohn (2016, 30) suggests that through participating in a national system of voluntary non-remunerated (VNR) donation, donors are “making a social group”, as they perceive they are donating with and for other people who are similar to them. Donating for research may disrupt this sense of donation as a collective activity because the benefits, and beneficiaries of, research are less clear, potentially making donors more reticent to give. Finnish research reported that, similar to the general population, biobank participants expected returns in the form of being informed by the BCA about research findings that might have implications for either their personal or for public health (Raivola et al. 2019; see also Milne et al. 2022). These findings suggest that the principles of a reciprocal relationship between donors and BCA applies to other services offered by the same institution, potentially including return of individual-level genomic results.

The large body of work exploring views on participation in genomic research and return of results by healthy individuals may also be instructive in understanding the views of blood donors on future genomic testing (Milne et al. 2022). Research with the Australian public found most wished to receive individual research results and incidental findings from research involving samples or tissue explicitly donated for that purpose, while a minority preferred not to be informed about genetic risk of an inherited disease (Critchley et al. 2015; Fleming et al. 2015). A recent systematic review of stakeholder perspectives on the return of individual research results from genomic research, that included studies from Australia, reported high interest from members of the public in receiving unsolicited findings (disease-causing variants identified inadvertently) and secondary findings (disease-causing variants actively searched for), particularly results that could be acted upon through treatment or prevention (Vears et al. 2021). This review identified that those receiving results as lay participants, as opposed to those participating because of disease status or family history, valued results differently, such as being more interested in receiving information of uncertain significance, while some had concerns about the implications of receiving results. Given the healthy status of blood donors their perspectives would be expected to be similar to these lay participants.

While blood donors and the public may have an interest in receiving different types of results from genomic testing, the literature has critically analyzed the “promise” of genomics to provide health information and diagnoses of use at both the collective and individual-levels (Terkildsen et al. 2020). Personal genomics services such as 23andMe provide opportunities for people to receive information about themselves while also contributing to research, an opportunity described as exciting and empowering for participants (Kragh-Furbo and Tutton 2017, 176). Tutton and Prainsack (2011, 1082) contrast this “enterprising” or entrepreneurial self with the “altruistic” self that is constructed through the practices of participation in publicly funded biobanks such as the UK biobank, and potentially through engaging in blood donation (Petersen and Lupton 1997; Busby 2006). Despite popular narratives that position genomic data as of value to all citizens (Tutton and Prainsack 2011; Reardon 2022), scholars have demonstrated that genomic information requires expertise and the active participation of patients or consumers for it to be turned into clinically meaningful data, and often individual-level genomic data does not have any clinical relevance (Prainsack 2017; Reardon 2022; Finlay 2017). Further, providing genomic information to people when they have not specifically asked for it can be harmful (Malakar et al. 2023). Within the context of personal genomics services, the receipt of information takes place without the involvement of doctors (Kragh-Furbo and Tutton 2017). Dominant neoliberal discourses position health as an individual project of civic responsibility for the common good (Petersen and Lupton 1997), and genetic information as contributing information that aids this project of self-knowledge and health management (Petersen 2022; Prainsack 2017). Within this context participation in blood donation and biobanks is encouraged as an act of solidarity with benefits for health and the “public” (Snell, Tarkkala, and Tupasela 2021). However, an interview study with UK consumers who had used direct to consumer genetic tests (DTCGT) and NHS clinicians revealed tensions around questions of responsibility for individual health as opposed to collective health care. While there was common ground in appreciation of the NHS and shared vision, consumers and NHS clinicians held divergent expectations of expertise, responsibility and empowerment in the relation to the use of DTCGT results (Finlay 2017).

To date, no research has considered donor perspectives on receiving individual results from genomic testing conducted through blood donation, yet for many BCAs this represents the next stage of their evolution (Burgdorf et al. 2015; Gleadall et al. 2020; Luken et al. 2022). It is unclear what benefits and concerns those who are implicated in these potential scenarios, namely current donors and members of the public, identify in relation to receiving individual-level genomic information through the BCA setting in Australia.

In a previous paper, we reported views on the appropriateness of the BCA undertaking different types of genomic testing, and preferences for consenting to such testing (Thorpe et al. 2023). In that work participants considered genomic testing that was directly related to donation, such as by benefitting donors, recipients, or the blood supply, to be appropriate and to fall within existing donor consent. In this paper we report on previously unreported data relating to how participants conceptualized the benefits and risks of testing and return of results in the context of their views on the participation of the BCA in the healthcare system and the implications of return of results for the donor-organization context. Specifically, we consider if donors and non-donors want to receive genomic information through blood donation and why; and what implications they perceive from the BCA expanding its activities for the donor-organization agreement and the participation of the BCA in the Australian healthcare system.

Materials and methods

The data presented in this paper is part of a broader investigation into the potential impacts of extended genotyping and of inviting donors to participate in a biobank funded through a grant from Australian Red Cross Lifeblood. A qualitative approach informed by a constructivist paradigm was used for this research (Schwandt 1998). This approach considers participant perspectives on blood donation and genomics as informed by social norms, individual experiences and characteristics, and the local organization of blood donation systems. We conducted focus groups with current blood donors and eligible non-donors to access insights generated through group discussion and interaction (Morgan 2012). Ethical approval was received from Lifeblood’s Human Research Ethics Committee (2021#06).

Participants

Donor participants were recruited through Lifeblood’s database. Donors were eligible if they had not participated in research at Lifeblood in the past three months and had not opted out of research or from communications. Donors with diversity in donation experience, gender, age, location and ethnicity were selected randomly from the database. Eligible donors (90) were sent invitations by email and then contacted by telephone. Of those 48 were reached and invited to participate, with 24 agreeing.

Non-donors were recruited through a social research company (Stable Research). Non-donors could participate if they were eligible to donate blood in Australia and had not previously donated blood in Australia. Potential participants completed a screening survey to assess their eligibility and to facilitate recruitment of participants with diversity in gender, age, location, and ethnicity. Prior to participation all donors and non-donors were emailed the participant information sheet and consent form and had an opportunity to discuss the study with a researcher over the telephone and to opt in or out of receiving a copy of the findings.

Participants included 24 donors and 25 non-donors who ranged in age from 18 to 65 years (see Table 1). Donors had donated blood and/or plasma between 1 and 58 times.

Table 1. Demographic characteristics of donor and non-donor participants.

Participants	Donors	Non-donors
N	24	25
Age	19–62 (mean = 35)	18–65 (mean = 38)
Gender
Male	14	10
Female	10	15
Ethnicity
European/Australian	12	18
Asian	5	7
African	2	0
Unavailable	5	0
Donation history	1–58 (mean = 15)	n/a

Focus groups

Eight online focus groups were held using Microsoft Teams, four with donors and four with non-donors. Focus groups were attended by 5–8 participants, a facilitator, a note-taker and a transfusion medicine specialist. Generally, 3–5 groups with 4–10 people is adequate to cover a topic (Liamputtong 2012). All participants consented to participate and to be recorded at the start of the focus group. Each focus group went for 1.5-2 h. Three hypothetical scenarios were used to prompt discussion about the use of genomics in the blood donation context (Finch 1987). The scenarios were written by the researchers and scientific advisory team which included transfusion medicine specialists and a hematologist with expertise in blood group genomics. Each scenario involved Lifeblood conducting routine genomic testing and notifying a hypothetical donor of a finding. The following scenarios were used: 1. The donor is informed that they have a rare blood type. They are encouraged to donate regularly; 2. The donor is informed that testing has revealed a genetic marker that indicates reduced ability to replace iron stores. They are advised to only donate whole-blood two times a year (as opposed to the maximum of four yearly donations allowed) or to donate plasma instead; 3. The donor is informed that testing has revealed a genetic marker implicated in bowel cancer. They are advised to visit their doctor to undergo further testing.

With the exception of the first scenario, which is a process currently undertaken, the scenarios outlined hypothetical events based upon testing that could be routinely offered by Lifeblood with adoption of next generation sequencing and advances in knowledge of genomic markers implicated in blood donation.

Discussion prompts about general views on each test, perceived acceptability of the testing by the BCA, providing consent, and the broader implications for donors followed the introduction of each scenario.

Analysis

The focus groups were audio and video-recorded and transcribed verbatim. The transcripts were checked against the audio and video to add in non-verbal cues such as agreement or disagreement with a speaker. A thematic analysis approach was used incorporating inductive and deductive coding, with additional coding conducted to capture group interaction (Braun and Clarke 2006). Descriptive codes were applied to capture both what participants said about genomics as well as how they discussed genomics as a group, including agreement, disagreement, or reluctance to discuss certain topics (Morgan 2012). Following initial coding the research team met to discuss the coding framework and interpretation of data. During this process codes were refined and new codes added. Final codes were added into the qualitative data management software NVivo (QSR international). Further analysis was then conducted to identify broader over-arching themes and to group codes into themes.

Results

Overall, donors and non-donors expressed similar views about the topics discussed. When there were differences identified these will be discussed in examples.

Benefits for managing health as a “healthy donor”

When considering genomic testing and receipt of individual genomic results in the context of blood donation donor participants talked about this as a bonus because this was not their primary reason for donating blood, they would not expect to receive this information in this context, would not have undertaken a blood test at that time in the absence of symptoms and the service would not cost them anything. Non-donors also considered receiving this kind of information would be an unexpected benefit of donating blood. In Australia General practitioners (GPs) are the doctors that manage patients across their lifespan, including referrals to specialists. In 2022, the cost of GP visits were covered by public health insurance for around 87% of visits (Gordon et al. 2022).

I think just to be aware, because I wouldn't just go into the GP and get a blood test for no reason or anything. If I did donate blood and they have this kind of, like, information, so I think it's great information for me to know like what everyone else (has said), because it's my health and also, for safety reasons as well. (donor, FG4)

I think the more testing the better. And when I think, when did I get a full spectrum blood test from my GP, it's like years and years, and it's only when something is wrong. So, if the Red Cross can offer that service, and give the results to people, then that's just like a second health thing. (non-donor, FG6)

As the above quotations indicate, the main benefits identified by participants related to the incidental nature of this information: they were not actively seeking genomic information at that time because they did not perceive themselves to be unwell. To be eligible to donate blood, donors undergo health screening, and blood donors are generally considered to be healthier than the general population (Atsma et al. 2011). Further, some donors perceive their eligibility to donate as evidence of their health (Naing et al. 2022). Non-donor participants in the research were eligible to donate blood and could be assumed to be generally healthy people. As such, the benefits raised in discussions primarily focussed on the value of information to learn more about their current health, such as monitoring iron levels and undertaking checks related to bowel cancer, or to better manage future health if a condition did develop. While rare blood type information was viewed as primarily relevant to them in the context of blood donation, information about iron metabolism was thought to be of benefit both for donation-related and personal health. Information about pre-disposition to bowel cancer was viewed as adding to their knowledge of themselves and their health outside of the blood donation context. Consistent with this, participants talked about using information about bowel cancer risk when planning a family. Most participants indicated they did not visit a GP routinely and thought that testing undertaken by Lifeblood may provide them with information they would not have otherwise received at that time.

Donors or patients?

While participants talked about visiting their GPs for clarification of clinical significance and advice as a result of receiving information about iron metabolism or bowel cancer risk, most distinguished between receipt of information about disease predisposition and diagnosis with disease and did not talk about this information affecting their status as a healthy donor or a healthy person. Despite the iron metabolism scenario explicitly inviting participants to reflect on becoming temporarily or permanently ineligible to donate whole-blood, participants viewed this scenario as an example of the organization prioritizing donor health and helping them to better manage iron stores rather than as resulting in a change of status from healthy donor to patient. Similarly, the bowel cancer scenario was viewed by most as an opportunity to seek preventative care. This interpretation by participants may reflect the different value of this information for people who are not actively seeking feedback on their health compared with people who undertake genetic testing because of underlying symptoms (Finlay 2017; Vears et al. 2021).

A small number of non-donors did express concerns about their status changing from healthy to potential patient due to genomic testing conducted through blood donation. Two participants in one non-donor focus group indicated they would choose not to receive individual results because they thought that receiving such information would not be diagnostic and would cause unnecessary worry. These participants talked about a growing capacity for adverse findings to be identified from blood tests without any clear benefit for the recipient. Similarly, non-donor participants in a second focus group indicated that while they themselves were interested in receiving findings, they thought that people they knew would not want to receive findings.

Fifty years ago there was one type of cancer, now they got 50 types of cancer. Whenever you go to the GP or get anything tested something’s going to come up. Ninety per cent that some issue’s going to come up, depending on your age bracket, obviously. But the less you know the less you worry about it and you live your normal life. (FG8, bowel cancer scenario, non-donor)

Participants also expressed concerns about the benefit and utility of genomic information and how it could be used either by themselves or the BCA. Donor participants tended to resist encroachment of the BCA into decision-making about their lives and donation practice that they envisaged could follow from the organization having access to their genomic health information. In relation to the iron metabolism scenario donors reported that genomic information that may not be clinically relevant should not be used to defer donors from donating, and that providing donors with information about disease risk was acceptable while providing lifestyle advice was not. Non-donors did not raise these concerns.

I think it’s very much your role to provide that information, if it’s just information … but yeah, if you're then going to tell me, “well, you need to walk more or run more or exercise more,” that’s a different thing. But just giving us the information that, “you've got a possibility of cholesterol, or diabetes,” or whatever it is, I think that’s very much in that spirit of that transaction. (FG2, donors)

In these examples donors raise concerns about how the receipt of individual genomic information may affect their choice to donate blood and to not be deferred unless there is a likely adverse outcome for them, and their choice to decide how they manage their own lifestyle and health. These concerns seem to relate more broadly to the voluntary nature of blood donation, and to the nature of the exchange between donor and BCA. While donors accept being deferred on health grounds, they are unsure if or when individual genomic results relating to disease pre-disposition should be used to defer donors. They are also wary of BCAs expanding their reach over donor lives beyond the blood donation context, a role more expected to be held by their GPs.

Making the most of donated blood (and expertise of the organisation) as a resource

While acknowledging the benefits of receiving genomic results through blood donation and most indicating they would gratefully receive this information, donor participants maintained that they had no expectations of being offered genomic information through donating blood. Rather, they positioned advances in genomics and precision medicine as an opportunity for the organization (Lifeblood) to use donated blood and their expertise in blood collection and testing to obtain more information from donor blood that could benefit recipients, donors, and the healthcare system. As donors or potential donors, they saw testing as something that “made sense”, as a way of extracting greater value from blood samples already collected by the organization. A number of donor and non-donor participants labeled themselves as people who were interested in receiving as much information about their health as possible, and one donor participant indicated they were already motivated to donate because of routine testing undertaken on donor blood. Further, participants spontaneously raised examples of other types of health information they would like to receive through blood donation, such as that related to diabetes, cholesterol, and other types of cancer. They anticipated that technological advances, and cheaper technology, would increase the possibilities for personal genomic health information to be identified from blood, and thought that BCA were well placed to be part of this advance. Their views reflected the current context in which the collection of personal health information has been normalized through technology, and individuals are encouraged to keep track of their own health (Ruckenstein and Schüll 2017). Their views also align with the idea of the enterprising or entrepreneurial subject who is interested in receiving this information for their own knowledge of their selves and health:

The technology is going to go gangbusters in the next 10 years, so being able to know about your iron levels, or future cancer, and five million other things, and being able to do that when you give blood, that would be amazing. (FG6, non-donor)

Participants also foresaw the organization playing a complementary role to primary health care through providing results directly to a donor’s GP with benefits for the healthcare system as well as for themselves. Specifically in relation to the bowel cancer scenario a donor noted that they, and other donors receiving this information, would be made aware of a disease pre-disposition and be more likely to get check-ups and reduce the likelihood of disease developing.

If you've got markers in your genes that there’s a chance of you having a condition, you can get on top of it earlier. So you may be able to do something about that health issue before it becomes an issue, which would take pressure off the entire health system in some ways as well. So you don’t – you may not need as much treatment down the track [agreement from another participant]. (FG2, donors)

In this way, participants viewed donated blood as a public good and collective resource that could be better utilized for the benefit of individual donors and the broader healthcare system, using language consistent with both “altruistic” and “enterprising" selves (Tutton and Prainsack 2011, 1082). Participants also saw the BCA fulfilling a role as an intermediary between donors and their healthcare providers and as a potential supplier of blood/health care data.

Different to primary healthcare

Participants reported that if Lifeblood were to return genomic test results to donors the organization would need to explain the differences between receiving test results through blood donation and receiving care from a GP. In these discussions some expressed the belief that blood donation should not become the primary context for receipt of health information and should not replace the doctor-patient relationship. Participants primarily thought it was necessary to explain the difference between these two contexts because they perceived limits to BCA-conducted testing – that it is not diagnostic, is not a comprehensive health check, and that the organization does not have expertise in interpreting the clinical meaning of genomic results or in genetic counseling. Some preferred to be responsible for their own health and did not think this was the responsibility of the BCA.

If you are going to do that kind of testing, one thing that was occurring to me as we were talking before is, to make it really clear for people that donating blood isn't a substitute for getting regular health checks and things like that. That we may provide this information to you if we find something, but it’s not a substitute for conversations with your doctor or other health professionals. (FG6, non-donors)

In the event that Lifeblood did provide this testing, participants raised concerns that the community may not understand the primary purpose of Lifeblood as a place to donate blood, as opposed to a health care setting, with potentially negative implications for donor recruitment and retention.

I think we go to the blood bank to donate blood, and not to get a health test. You expect that relationship to be with your doctor or a healthcare professional and not the blood bank. (FG2, donors)

Here, the participant expresses the view that the BCA needs to retain its primary identity. This perspective contrasts with the positive outcomes that most participants perceived would result from receiving genomic testing as an incidental outcome of blood donation. This view perhaps suggests caution about the BCA losing donors were they to promote themselves as a health-testing venue or about making a different form of “donor” by re-framing the nature of the donor-organization contract. Alternatively, perhaps the non-donor participants were considering if they would want to receive additional health testing were they to choose to donate blood, while donors may have been considering if or how receiving health information may change the donor role and experience of donation.

Some discussions focussed on whether provision of genomic results through blood donation would be viewed as an incentive to donate because the testing would be conducted for no cost and people saw it having relevance to them. In our data, donor participants generally indicated they would not change their donation behavior (e.g. donate more often) if genomic testing was offered. Some non-donors indicated they, and other non-donors, may consider donating blood if genomic testing were undertaken because the blood could be used for others (donated) as well as to benefit them, and they anticipated benefits of receiving health information at no cost to them.

I think it would actually make me more inclined to do it because I’d see it as one of the – like an additional perk if you like, being able to find out a little bit more about my own body and if I had any issues and that sort of stuff. That’s me personally, I like to find out as much information as I can. (FG5, non-donor)

These findings are similar to those reported in studies that have explored how donors and non-donors view the offer of incentives in voluntary non-remunerated settings. That is, donors express ambivalence about the impact of incentives on their donation behavior (Van Dyke et al. 2020), however incentives have been shown to have positive impacts on donation behavior if they align with social norms (Graf et al. 2023). Individual genomic results, given their ad hoc nature and potential negative implications for health are different to other types of health information that is, and could be, offered to all donors. Here, participants tended to consider the option of receiving individual genomic results as an acceptable part of the exchange as long as they were a secondary purpose of donating to help patients receive blood/care, and did not disrupt their sense of themselves as healthy, voluntary donors.

Participants did raise concerns, as well as benefits, related to other people donating to receive health information. Concerns raised were that these donors may not intend to continue to donate; that blood donation would be perceived as an alternative to seeing a GP and that this may “taint” altruistic motives (Bednall and Bove 2011).

I was thinking, people might take advantage of this service, to just get the tests done for free … – I’m not saying most people, some people would, that’s the main reason. And they may not have the intention to continue donating the blood, because they get the test done. I don’t know how you are going to balance. (FG6, non-donors)

These concerns reflect the construction and promotion of blood donation as an activity that builds community through the participation of like-minded people, and the potential threat to this posed by “wrong” people donating for the “wrong” reasons (Busby 2010; Cohn 2016). Benefits raised were that this approach may bring in more blood donors, such as people who have a general interest in receiving genetic information.

I think I'd be more likely to trust the Red Cross with my medical data [agreement from one other] then I would 23andMe or Ancestry.com or whatever. I just think there are (other) people who would like to be more informed and like to just know all the things. (FG3, donors)

In this context, as has been found for biobanking, the BCA was raised as a trusted setting for undertaking testing and providing donors with genomic results. These findings align with Australian research demonstrating a preference for receiving genetic results through a trusted source to protect the privacy of results (Critchley et al. 2015).

Discussion

Our results demonstrate that participants considered the question of receiving genomic results through blood donation from the perspectives of a healthy, altruistic donor, an “entrepreneurial self” and, at times, a potential patient within the current healthcare system (Petersen and Lupton 1997, xiii; Tutton and Prainsack 2011). For example, receiving genomic results was considered acceptable for most if that information was provided secondary to the primary purpose of donating blood, but not if it was the primary purpose of donation, maintaining the Titmussian principle that blood is a gift to a patient. Eligible healthy donors can choose to donate blood for patients and as an expression of solidarity with the system of blood exchange that provides blood for others, including their own future selves. Our findings suggest that receipt of genomic health information is viewed as fitting into the principles of this exchange with some limits. These limits talk to perceptions of differences between the donor role and the patient role, and between the roles of a BCA and doctors. The BCA was not considered to be a healthcare setting that has the expertise to offer diagnostic information to donors, nor to be a place that should provide donors with lifestyle advice. This finding may reflect that Lifeblood is a Red Cross-affiliated BCA. That is, while it is widely trusted to collect and test blood, it has not established itself as having broader healthcare expertise or as being part of the Australian healthcare system. Findings also talk to a want by participants to retain clarity of the blood donor role as separate from that of health-care consumer, and of the BCA as separate from a health-care setting. Finally, offering additional information to donors was considered a potential risk to the mutual relationship between the donor and organization if people donated to receive information. Our question is why these aspects may be important, and what purpose keeping these roles separate serves for blood donors and the public?

Identified benefits of receiving genomic results through blood donation were primarily positioned as “bonus” information that could be used to benefit a donor’s future health, and participants expressed concern about people donating solely to receive test-results without committing to a donation practice. This positioning does not disrupt the role of a volunteer blood donor as a healthy altruistic individual oriented toward helping others, and this role is maintained as one that could be taken up by participants and as one that BCAs can offer to donors as part of their mutually constructed ideas of the BCA/donor relationship (Healy 2006). This positioning also acknowledges the ongoing need for volunteer blood donors to maintain the blood supply and that supply is dependent upon strategies employed by BCAs to encourage people to donate blood on an ongoing basis (Dalsgaard 2007). In this sense, the possibility of offering genomic results of note to some was considered an acceptable strategy as long as people were donating for predominantly altruistic reasons.

Participants understood that any genomic information provided through donation may not be clinically relevant either for them as blood donors or for their overall health. As such they resisted the idea that this kind of testing should be used to impact their status as healthy donors (or non-donors), or their ability to choose to donate blood and to continue to be part of that system and the “real and imagined social relationships that congeal around the blood donation practices” (Cohn 2016, 33), unless donation was harming their health. However, unlike the donors that Cohn (2016) reports being apprehensive that research use of donated blood could confuse these social relationships, here the participants were more positive that genomic testing conducted in the blood donation context could strengthen donor-patient relationships and considered the possibilities for such testing to create collective benefits for the Australian public in the future. Distinguishing between the BCA and doctor roles serves to keep the current blood donor and BCA contract intact, with perceived benefits for donors, future donors and the Australian public.

While participants preferred to minimise the role of the BCA in providing health advice, questions of what happens when information given to healthy donors changes their status to that of a "patient” or makes them ineligible to donate blood, and who is responsible for managing this, are important to discussions of genomic testing in the context of blood donation. Research indicates donor are likely to be grateful if testing results in early diagnosis of disease (Rottenberg et al. 2009). However new tensions may arise between BCAs and GPs around whose role it is to undertake genomic testing, and interpretation of genomic information, and who should pay for it. This may be particularly important in countries such as Australia where the BCA is not perceived to be part of the healthcare system outside of the provision of blood products.

While distinguishing between the BCA and healthcare settings, most participants expressed enthusiasm for receiving health information of all kinds through blood donation, drawing upon promissory discourses to envisage benefits at the individual-level, and for the healthcare system, if the organization were to undertake more genomic testing and provide the test results to donors (Tutton and Prainsack 2011). Their logic was one of making the best use of blood already collected and existing expertise of the organization in testing blood. Donated blood was considered to possess value beyond the primary purpose that it was given for, that new and emerging technologies could extract (e.g. Mitchell and Waldby 2010). In this context, participants considered genomic testing to be consistent with their roles as altruistic donors as it was making efficient use of a resource and the perceived benefits would accrue to the broader healthcare system as well as to themselves, where they would use that information to improve their future health (see also Chmielewski et al. 2012; Tupasela 2011). As such, genomic testing was viewed as improving the organization-donor exchange by adding information that can be used by donors to stay healthier and to feel more committed, the BCA is able to supply higher quality products more efficiently to the healthcare system, and patients get better treatment.

Finally, while participants viewed genomic testing conducted through the BCA as acceptable, the cost effectiveness of conducting this testing in this setting is unclear, and this aspect was not discussed by participants. BCAs are investing in research to further understand associations between genomic markers and blood donation, however as yet this has not yielded any concrete findings able to inform donor management. Participant views highlight that they perceived receipt of genomic information through blood donation to relate to a broader question of the organization of health care, and questions about what testing should by conducted by BCAs and who will benefit from this need to be considered.

Conclusions

In sum, in this paper we considered the implications of returning findings from extended genotyping of donor blood to donors in the Australian context. Noting that our findings are contextually bound to both Australian Red Cross Lifeblood and an environment in which there is no clear normative support for the provision of genomic information to blood donors (Graf et al. 2023), overall, we found that donors and non-donors were very positive about the opportunity to receive genomic results that could help them to better maintain their health and continue to donate blood. However, they remained unconvinced of the universal benefits of this type of information, particularly if results might affect a status change from a healthy donor to a patient. Participants could see the benefits of genetic testing to make more efficient use of existing resources, like donated blood, that donors could use to take better care of their health. However, they did not want these developments to change institutional relationships – the contract of altruistic, voluntary blood donation – in ways that might start working against these goals, e.g. if donations were not made for patients but as (future) patients, or that resulted in a lack of clarity about the responsibilities of donors, BCAs and primary health care. Going forward, the purpose for BCAs to test and return such information should be clearly stated. It is important to consider the ethics of undertaking genotyping and providing results to blood donors without current clinical value, as well as the impact of providing this information on the dynamics of the donor-BCA relationship. Additional findings from these tests which may be actionable for the donor now or in the future will provide ethical and potentially legal challenges for BCA, so the potential for these and the responsibilities of the BCA need to be carefully considered.

Acknowledgements

The authors would like to thank Dr James Daly for advice on the manuscript and help with project design, Kyle Jensen, Dr Kobie von Wielligh, Dr Jonathon Wong and Athina Kakkos for their help with data collection, Glen Shuttleworth and Perfecto Diaz for data management and the study participants for their time.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

Australian Governments fund Australian Red Cross Lifeblood for the provision of blood, blood products and services to the Australian community.