Public views on the donation and use of human biological samples in biomedical research: a mixed methods study

Lewis, Colin M.; Clotworthy, Margaret; Hilton, Shona; Magee, Caroline; Robertson, Mark; Stubbins, Lesley J; Corfield, Julie

doi:10.1136/bmjopen-2013-003056

Cited by 36 publications

(73 citation statements)

References 38 publications

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“…Our informants could grasp the response‐adaptive trial design and saw it as advantageous, particularly during a pandemic outbreak, but did not necessarily consider information about study design as a priority during an outbreak. Our findings confirm the general public's acceptance of donating excess material from routinely collected clinical samples for biomedical research provided safeguards are in place to protect against identification of the individuals and that the research was being performed primarily for patent benefit rather than to make a profit …”

Section: Discussionsupporting

confidence: 72%

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Gobat

Gal

Butler

et al. 2017

Health Expectations

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BackgroundPandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza‐like illness pandemic.MethodsDescriptive‐interpretive qualitative study, using focus groups (n = 10) and semi‐structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario‐based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis.ResultsPublic understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life‐threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low‐risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain.ConclusionsThis bottom‐up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low‐risk studies.

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Section: Discussionsupporting

confidence: 72%

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Gobat

Gal

Butler

et al. 2017

Health Expectations

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“…Some previous studies have identified several sociological characteristics and personal factors associated with the willingness to participate in the specimen donation and biobank researches. In general, different gender, age, nationality, marriage, education background, donation history, family disease and the knowledge of biospecimen donation have been proved can influence public's willingness in specimen donation [6,[24][25][26]. Also, researches have reported that people with higher education background may hold more positive attitudes toward donation [27].…”

Section: Discussionmentioning

confidence: 99%

Biospecimen Donation in Biobank Construction: Aspects Affecting Donation and Publics’ Concern

Zhou

Zhang

et al. 2019

Preprint

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Background A biobank is a storage facility which stores sample mainly for biological or medical researches. Biospecimen collection is the kind of work essential in the building of biobank. However, we found the collection works had the difficulties in the proceeding because of the low anticipation rate. Methods We here conducted a questionnaire including several questions covered several aspects in order to find out people’s attitude towards biospecimen donation. The questionnaire had 20 questions mainly focused on overall publics’ participation rates, matters that influence their participation and major publics’ concerns in biospecimen donation. Results In our survey, 1477 from 2200 distributed questionnaires were responded, and electronic questionnaires showed the highest response rate of 49.9%. In all respondents, 936 showed willingness in participation, providing a percentage of 63.4%. We found that most respondents lack the knowledge of biospecimen donation and biobanking but still have a positive attitude towards biospecimen donation. Several factors, including family disease history( p <0.05), previous donation history ( p <0.01), the knowledge of biospecimen donation ( p <0.01), the knowledge of biospecimen donation conception ( p <0.01) were closely linked to donation willingness. Among those factors, family disease history, brief knowledge about biospecimen donation were independent factors affecting donation willingness. The reverse health effects and privacy leakage were major concerns among the majority of respondents. Primary reasons affected willingness, or unwillingness donation were their benefic to public interests and privacy concerns. In summary, this survey we mainly discussed factors affecting publics’ willingness and issues people concerned most in biospecimen donation of a biobank. Conclusions Most respondents hold positive attitudes towards biospecimen donation but lack relevant knowledges. Several factors influenced donation willingness probably caused by those deficiency knowledge. Even though faced this challenge, responders’ merits of altruistic behavior may contribute to the act of donation. In addition, information leakage and health impairment remained the domain factors prevented their participation. Further works are required to eliminate those undesirable elements restrained biospecimen donation by the well biobank knowledge popularization and detailed pre-donation information exchange .

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“…Many supported the sharing of biosamples with other organisations after use, but often with conditions about the nature of the organisation and the types of uses to which samples will be put, and with concerns about anonymity and misuse. Commercial organisations were generally viewed negatively, while advancements in medical science were viewed favourably, echoing existing research [ 10 , 24 , 33 ]. Lewis and colleagues [ 8 ] identified similar aversion to commercial organisations, as well as some misgivings about animal research and research conducted outside of the UK.…”

Section: Discussionmentioning

confidence: 99%

“…Ownership of donated biosamples is another issue raised by research using biosamples [ 7 , 24 , 25 ]. While the MRC advise that donations should be part of a ‘gift relationship’ that reduces ‘uncertainty over ownership’ [ 26 ], Dixon-Woods and colleagues [ 27 ] argue that ethical policy based on Titmuss’ model of altruism without expectations of reciprocity [ 5 ], is unsuitable for modern medical research, in which distinctions between not-for-profit and commercial research are not always distinct.…”

Section: Introductionmentioning

confidence: 99%

Gay and Bisexual Men’s Perceptions of the Donation and Use of Human Biological Samples for Research: A Qualitative Study

2015

Self Cite

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Human biological samples (biosamples) are increasingly important in diagnosing, treating and measuring the prevalence of illnesses. For the gay and bisexual population, biosample research is particularly important for measuring the prevalence of human immunodeficiency virus (HIV). By determining people’s understandings of, and attitudes towards, the donation and use of biosamples, researchers can design studies to maximise acceptability and participation. In this study we examine gay and bisexual men’s attitudes towards donating biosamples for HIV research. Semi-structured telephone interviews were conducted with 46 gay and bisexual men aged between 18 and 63 recruited in commercial gay scene venues in two Scottish cities. Interview transcripts were analysed thematically using the framework approach. Most men interviewed seemed to have given little prior consideration to the issues. Participants were largely supportive of donating tissue for medical research purposes, and often favourable towards samples being stored, reused and shared. Support was often conditional, with common concerns related to: informed consent; the protection of anonymity and confidentiality; the right to withdraw from research; and ownership of samples. Many participants were in favour of the storage and reuse of samples, but expressed concerns related to data security and potential misuse of samples, particularly by commercial organisations. The sensitivity of tissue collection varied between tissue types and collection contexts. Blood, urine, semen and bowel tissue were commonly identified as sensitive, and donating saliva and as unlikely to cause discomfort. To our knowledge, this is the first in-depth study of gay and bisexual men’s attitudes towards donating biosamples for HIV research. While most men in this study were supportive of donating tissue for research, some clear areas of concern were identified. We suggest that these minority concerns should be accounted for to develop inclusive, evidence-informed research protocols that balance collective benefits with individual concerns.

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Public views on the donation and use of human biological samples in biomedical research: a mixed methods study

Cited by 36 publications

References 38 publications

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Biospecimen Donation in Biobank Construction: Aspects Affecting Donation and Publics’ Concern

Gay and Bisexual Men’s Perceptions of the Donation and Use of Human Biological Samples for Research: A Qualitative Study

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