Study population

The participants’ characteristics are detailed in table 1.

Focus groups

One hundred and eighty-two members of the public who were approached were eligible and 81 people agreed to participate (45% response rate; 48 women and 33 men).

Survey

Four thousand six hundred and seven people were invited to take part in the survey; 2014 did not respond, 860 started to complete the survey but did not finish, 102 did not qualify to continue, 521 qualified for the survey but the quota was full and 1110 completed the questionnaire (28% response rate excluding those who did not qualify and where the quota was full). This response rate is comparable to similar studies on this topic.6 Our quota sample was close to but not exactly matching our set targets. For this reason, we carried out weighted as well as unweighted analyses. There was no difference in the conclusions we reached by either method. In this paper, we present the unweighted results (weighted results can be found from the online supplementary appendix IV).

Interest in being asked to donate

We began by providing a brief description of the use of HBSs in biomedical research and then asked survey participants whether, in general, they wanted to be asked to donate. Three quarters (75%) of survey participants wanted to be asked (29% definitely yes and 46% probably yes), 18% did not want to (14% probably not and 4% definitely not) and 7% did not know. When asked how important they thought it was to donate HBSs for biomedical research, 87% said it was either extremely important (50%) or important (37%). Less than 1% of participants (n=5) thought it was not at all important.

Respondents who wanted to be asked to donate HBSs were significantly more likely to be: either not religious or only moderately so (where they did have a religious affiliation, 79.7% vs 59.7%, χ²=36.56(1); p=0.001), from higher SEGs (A–D vs E, 83.8% vs 62.2%, χ²=36.55(1); p<0.001), had tissue removed during a medical or surgical procedure (87.2% vs 73.1%, χ²=27.13(1); p<0.001), had some or good knowledge of the medical research process (84.4% vs 75.1%, χ²=13.04(1); p<0.001), were under 55 years (84% vs 75.1%, χ²=11.56(1); p=0.001), were ‘White’ (81.7% vs 60.9%, χ²=10.9(1); p=0.001), had no religious affiliation (86.4% vs 77.9%, χ²=9.9(1); p=0.002) and had an education level of A-level or equivalent or higher (83.4% vs 76.1%, χ²=7.18(1); p=0.007). Using the boost sample for ethnic minorities, we found that ‘Black’ participants were significantly less likely to want to be asked to donate than ‘White’ participants (53.3% vs 81.7%, χ²=20.12(1); p<0.001). Participants who had a close family member affected by a condition were more willing to be asked to donate than those who had not, although the difference was not quite statistically significant (70.7% vs 63.3%, χ²=3.8(1); p=0.051).

Four independent variables were found to have a significant impact on participants’ interest in being asked to donate tissue as shown in the logistic regression model in table 2. The strongest predictor for wanting to be asked to donate was being from a higher SEG (A–D vs E, OR 3.52, 95% CI 2.19 to 5.66; p<0.001) followed by having had tissue removed during a medical or surgical procedure (OR 2.51, 95% CI 1.65 to 3.84; p=0.001), being either not at all or only moderately religious (OR 2.42, 95% CI 1.31 to 4.47; p=0.005) and having self-reported some or good knowledge of the medical research process (OR 2.01, 95% CI 1.33 to 3.03; p=0.001).

Focus group participants also showed a strong willingness to donate HBSs for biomedical research. Four key reasons were provided by the participants. First, it was a good way of reciprocating for medical treatment received in the past, second, it was viewed as an ‘important way of developing drugs and treatments’, and third, that residual tissue, which participants did not have any strong emotional ties to, would otherwise go to waste. The fourth reason offered was one of personal benefit where participants themselves or a family member was affected by an illness or disease. Someone in my family has got Alzheimer's so I'm particularly supportive. (Female, 18–24 focus group)

A minority of focus group participants did raise concerns. These included surgeons taking “liberties or advantage of the fact that you're out cold,” concerns about data privacy and mistrust of profit-making companies using donated HBSs or the government regulating their use. The world's very corrupt, and if something needs to get pushed through, it gets pushed through. (Female, ‘Black’ focus group)

While interest in donating appeared to be high, it was evident that knowledge of the medical research process was low. In the survey, only 4% of respondents self-reported having a ‘good knowledge’ of the research process, 54% said they had ‘some knowledge’ and 42% said they had ‘no knowledge’. Similarly, a number of focus group participants commented that the information leaflet was the first time they had heard anything about the use of donated HBSs in medical research.

Types of HBSs

Residual HBSs

The majority of survey participants were either definitely or probably willing to donate residual blood (92%), cancerous tissue (90%), fat (89%), skin tissue (88%), bone or cartilage (84%) and liver tissue (84%) following a medical procedure (figure 1). Less than half of the participants were willing to donate spare eggs (women only, 48%) or spare embryos (44%) left over following in vitro fertilisation (IVF).

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Figure 1

Would you donate the following types of samples for medical research if they were left over (after necessary medical tests had been done) following a medical procedure?

Note: percentages may not add up to 100% due to rounding. The χ² test was conducted to examine effects of participants’ characteristics on willingness to donate spare eggs and spare embryos as these two tissue types caused the most divide among participants. Willingness in donating spare embryos was significantly associated with being: men (55.9% vs 48.3%, χ²=4.87(1); p=0.023), under 55 years (55.1% vs 45.3%, χ²=7.55(1); p=0.005), from a higher (A–D) socioeconomic group (54.9% vs 32%, χ²=22.05(1); p<0.001), White ethnicity (53% vs 27.7%, χ²=10.48(1); p=0.001), having a religious affiliation (63.5% vs 45.9%, χ²=24.13(1); p<0.001), being not at all or moderately religious where they did have a religious affiliation (48.1% vs 25.5%, χ²=9.38(1); p=0.002) and had tissue removed during a medical procedure (56.9% vs 46%, χ²=9.41(1); p=0.002). Women who were willing to donate spare eggs were significantly more likely to: be from a higher socioeconomic group (A–D, 58.5% vs 44.7%, χ²=4.45(1); p=0.035), White ethnicity (58.1% vs 17.4%, χ²=13.21(1); p<0.001), have no religious affiliation (71.5% vs 50.4%, χ²=18.47(1); p<0.001), be not at all or moderately religious where they did have a religious affiliation (53.5% vs 23.7%, χ²=10.88(1); p=0.001) and have had tissue removed during a medical procedure (62.8% vs 50.4%, χ²=6.77(1); p=0.009).

These results confirm our focus group findings, where most people were willing to donate residual tissue but donation of reproductive tissue raised concerns for a significant number of participants. A key concern was that reproductive tissue would be used for reproductive purposes without the knowledge of the donor. Although they said it's [ethical approval process] very strict, I still in the back of my mind have a thing where someone could take my egg and have my child. (Female, had operation in past 2 years)

A further concern related to whether it was ‘right’ from an ethical or religious perspective to be conducting research on reproductive tissue. I would be really worried...an embryo is a baby. I know it's still very, very early days, but you're playing God. (Female—patient affected by a condition)

Those people who were willing to donate reproductive tissue underscored the benefits that could result from such research. You have to remove yourself from the situation and imagine yourself as an infertile person and maybe someone that could benefit immensely from that research. (Female—18–24 focus group)

Some did, however, highlight the importance of being informed as to how reproductive tissue would be used because of its sensitive nature.

‘Healthy’ volunteers

Survey participants were then presented with a scenario in which they were asked to imagine that they are in a hospital waiting room awaiting an appointment and are asked whether they would donate certain types of HBSs specifically for the purposes of medical research (figure 2). Most responders were either definitely or probably willing to donate urine (89%), saliva (89%) and blood (81%); however, fewer people would donate tissue taken during a local anaesthetic (67%) or sperm (men only, 58%).

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Figure 2

Would you agree to donate the following type of samples for medical research, that is, not as part of any medical procedure, but purely for the purposes of research?

Note: percentages may not add up to 100% due to rounding. The χ² test was conducted to examine effects of participants’ characteristics on willingness to donate tissues requiring a local anaesthetic and sperm as these two tissue types caused the most divide among participants. Willingness to donate tissue requiring a local anaesthetic was significantly associated with: being over 25 years (72.9% vs 59.3%, χ²=9(1); p=0.003), from a higher socioeconomic group (A–D, 73.1% vs 60.9%, χ²=9.03(1); p=0.003), White ethnicity (72.3% vs 48.9%, χ²=10.87(1); p=0.001), being not at all or moderately religious where they had a religious affiliation (71.4% vs 49.2%, χ²=11.53(1); p=0.001), having good knowledge of the medical research process (75.8% vs 64.5%, χ²=14.96(1); p=0.001), having had tissue removed during a medical procedure (77.9% vs 64%, χ²=20.77(1); p<0.001) and having agreed to donate left over tissues (82.8% vs 45.5%, χ²=13.51(1); p<0.001). Men who were willing to donate sperm were significantly more likely to be: from a higher socioeconomic group (A–D, 66.8% vs 42%, χ²=14.47(1); p<0.001), White ethnicity (65.8% vs 22.2%, χ²=18.95%1); p<0.001) and be either not at all or moderately religious where they did have a religious affiliation (64.3% vs 36.4%, χ²=5.61(1); p=0.018).

Focus group participants were also generally positive towards donating HBSs specifically for research purposes, although some commented that they would not want to undergo an invasive procedure. Depends on what they wanted, if it's not invasive or nothing then I'd say yes. (Female—‘Black’ focus group)

A number of them said they would be more likely to donate HBSs if they did not have to travel somewhere specifically to do so. Focus group participants also appeared to want more information about how their sample would be used if they were donating HBSs as ‘healthy’ volunteers. I'd want to know the purpose behind it but if I'm helping something then why not? (Male—‘Chinese’ focus group)

Donation of HBSs in the event of one's death

We explored whether the public were willing to donate tissue and whole organs in the event of their death. First, we compared survey responders’ views concerning the donation of tissue taken from an organ with donating a whole organ using the liver and brain as examples. We found that tissue type had a greater impact on people's willingness to donate than the amount of tissue: 89% of people were willing to donate liver tissue, 68% a whole liver, 66% brain tissue and 53% a whole brain. On presenting participants with a list of organs and asking them whether there were any whole organs they would not consider donating for medical research in the event of their death, 71% said they would not donate their brain, 65% would not donate their eyes, 27% would not donate their heart, 14% would not donate their liver, 14% would not donate their lungs and 13% would not donate their kidneys. Five people (0.5%) said they would not donate reproductive tissue in the free text box. Seventeen per cent would not donate any organs for medical research.

Donating whole organs for medical research in the event of one's death caused unease for a number of focus group participants. Some had concerns about the impact on family members, citing that it was a ‘sensitive subject’ that made them feel ‘uncomfortable’. A woman in the South Asian group cited religious reasons for not wanting to donate organs. Others did not like the idea of their body being ‘chopped up like on a butcher's board’ and preferred ‘to remain whole’ and ‘untouched’. A few participants erroneously believed that their organs would not be useful to researchers because they were old or unhealthy. When focusing on particular organs, eyes were found to be most contentious and made participants feel ‘funny’ or ‘squeamish’. They also had concerns that eyes were ‘identifiable’.

When asked whether they would be willing to donate whole organs not suitable for transplant for research purposes instead, 68% of survey responders said they would, 11% would prefer they were not used at all if they could not be used for transplant, 9% would not agree to donate an organ for transplant and 12% did not know.

Uses of HBSs

The most controversial types of research were research involving HBSs in combination with animals (only 34% of survey participants would donate for this purpose), research conducted outside the UK (35%) and research involving ‘cells from embryos’ (41%; figure 3). Research into understanding how our body fights disease was the least controversial (85%).

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Figure 3

Would you be willing to donate samples for the following type of samples for research?

Note: percentages may not add up to 100% due to rounding. The χ² test was conducted to examine effects of participants’ characteristics on willingness to donate samples for research outside the UK and research involving animals as these two research types had least support. Those participants who were less willing to donate samples for research outside the UK were significantly more likely to be: over 55 years (67.8% vs 53.8%, χ²=17.2(1); p=0.001), from a low socioeconomic group (E, 72.8% vs 56.6%, χ²=11.92(1); p=0.001), non-white ethnicity (78% vs 58%, χ²=5.7(1); p=0.017), have a religious affiliation (63.4% vs 49.8%, χ²=14.83(1); p=0.001), have a lower education level (GCSE or equivalent or lower, 65.9% vs 55.5%, χ²=8.18(1); p=0.004) and not having had tissue removed during a medical procedure (62.5% vs 55%, χ²=4.57(1); p=0.033). Those participants who were less willingness to donate samples for research involving animals were significantly more likely to be: women (69.5% vs 51.8%, χ²=30.74(1); p<0.001), from a low socioeconomic group (E, 78% vs 58.4%, χ²=19.9(1); p<0.001), non-white ethnicity (80% vs 60.5%, χ²=6.09(1); p=0.014), have a religious affiliation (63.6% vs 56.7%, χ²=4.02(1); p=0.045), be very religious whereby they did have a religious affiliation (78.7% vs 61.9%, χ²=5.99(1); p=0.014), have no knowledge of the medical research process (67.6% vs 57.1%, χ²=10.4(1); p=0.001) and not having agreed to donate left over tissue for medical research (81% vs 49.3%, χ²=6.12(1); p=0.013).

Research involving animals was cited as a cause for concern by a number of focus group participants, particularly if the research caused the animals ‘excessive pain’. Others had concerns about the way animals were cared for in research settings. Nevertheless, a view held by a significant number of people was that research and drugs tested on animals was “not a nice thought...but in the long run the best option’ and that ‘the information gained from watching [an animal used in research] might help thousands of people.”

Research conducted outside the UK was a matter of concern for some focus group participants because other countries might not have similarly strict governance arrangements as those that exist in the UK, or because HBSs might be sold. Other types of research cited as being controversial included cloning, stem cell research, genetic engineering and ‘designer babies’.

Access to HBSs

Most survey responders were willing to donate HBSs to National Health Service (NHS) hospitals (84%), medical research charities (79%), universities (68%), diagnostic companies (63%) and pharmaceutical companies (56%; figure 4).

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Figure 4

Would you be willing to donate samples to the following organisations to carry out approved research?

Note: percentages may not add up to 100% due to rounding. The χ² test was conducted to examine effects of participants’ characteristics on willingness to donate samples for pharmaceutical companies as this organisation had the least support. Those participants who were less willing to donate samples to pharmaceutical companies were significantly more likely to be: over 55 years (39.4% vs 31.3%, χ²=6.16(1); p=0.013), from a low socioeconomic group (E, 43.4% vs 32.6%, χ²=5.91(1); p=0.015), non-white ethnicity (60.9% vs 32.9%, χ²=14(1); p=0.001), live in London (45.1% vs 31.7%, χ²=11.02(1); p=0.001), have a religious affiliation (38.1% vs 26.9%(1), χ²=11.1(1); p=0.001), be very religious whereby they had a religious affiliation (54.5% vs 36.7%, χ²=6(1); p=0.014), have no knowledge of the medical research process (38.3% vs 31.6%, χ²=4.14(1); p=0.042) and not having had tissue removed during a medical procedure (38% vs 29.8%, χ²=6(1); p=0.014).

Focus group discussions highlighted that there was generally a high level of faith in the benefits of science, and trust towards the NHS, charities and universities, who were seen as contributing positively towards society. The role of ethics review boards and legal systems in providing oversight and control of medical research was considered important; nevertheless, it was acknowledged that most people are unaware of these safeguards. I do now know something about the process, and like the ethics side and presenting to a board, but before I wouldn't have known anything about the research process. So I guess I'm just thinking, how would I feel if I didn't know about those procedures? (Female—pilot group)

Some initial negativity was found in relation to pharmaceutical companies conducting research because of their commercial, profit-making nature and concerns that they ‘exploit patients’. However, such concerns were often addressed by other members of the group who acknowledged that commercialisation of research was ‘a fact of life’ and that pharmaceutical companies ‘need to make money to keep their research going’.

Medical records and lifestyle information

We asked participants whether they would be willing to have medical records and lifestyle information linked but deidentified (so that the sample is anonymous to the researcher but contains codes that would allow others to identify an individual from it) to their biosample. Sixty-eight per cent of survey responders would, 22% would not and 10% did not know. Survey responders were more willing to have their deidentified lifestyle information linked to their biosample; 82% would, 12% would not and 6% did not know.

Concerns about linking medical records with HBSs were raised by focus group participants. Data protection and privacy were two key concerns; for example, participants were worried that their personal data might be ‘hacked or mislaid’. Others cited concerns about data being accessed by the police or insurance companies. Some participants felt uncomfortable about sensitive medical details such as sexual diseases or illegal drug use being seen by people unconnected with their health. Nevertheless, most participants understood the importance of linking medical records and lifestyle information to HBSs as long as they were not identifiable. You want the sample to be as useful as possible so you want to give them the most complete picture. You want to give them all the information that is available. (Male—had operation in past 2 years)