Public attitudes to the storage of blood left over from routine general practice tests and its use in research

Treweek, Shaun; Doney, Alex S.F.; Leiman, David A.

doi:10.1258/jhsrp.2008.008016

Cited by 38 publications

(41 citation statements)

References 27 publications

(52 reference statements)

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“…In particular, 'commercial use' raised questions, and many respondents preferred that their tissue should not be used commercially. Some studies report wariness about 'commercial use' while other studies do not (Jack and Womack, 2003;Treweek et al, 2009). Commercial use may deserve more attention in regulatory aspects and information to patients, because a large part of research is taking place in an environment in which 'commercial parties' are involved.…”

Section: Discussionmentioning

confidence: 99%

A trial of consent procedures for future research with clinically derived biological samples

et al. 2009

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BACKGROUND: The aims of this study were to determine which consent procedure patients prefer for use of stored tissue for research purposes and what the effects of consent procedures on actual consenting behaviour are. METHODS: We offered 264 cancer patients three different consent procedures: 'one-time general consent' (asked written informed consent), 'opt-out plus' (had the opportunity to opt out by a form), or the standard hospital procedure (control group). The two intervention groups received a specific leaflet about research with residual tissue and verbal information. The control group only received a general hospital leaflet including opt-out information, which is the procedure currently in use. Subsequently, all patients received a questionnaire to examine their preferences for consent procedures. RESULTS: In all, 99% of patients consented to research with their residual tissue. In the 'one-time consent' group 85% sent back their consent form. Patients preferred 'opt-out plus' (43%) above 'one-time consent' (34%) or 'opt-out' (16%), whereas 8% indicated that they did not need to receive information about research with residual tissues or be given the opportunity to make a choice. CONCLUSIONS: The 'opt-out plus' procedure, which places fewer demands on administrative resources than 'one-time consent', can also address the information needs of patients.

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Section: Discussionmentioning

confidence: 99%

A trial of consent procedures for future research with clinically derived biological samples

et al. 2009

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“…[20][21][22][23]58 An emerging body of research on biospecimen participation among ethnic groups revealed various concerns, such as stigmatization, loss of confidentiality, and a lack of trust in health care organizations. 6,[34][35][36][37][38][39]42 For example, Native Americans are often reluctant to consent to future unspecified research for fear that research results would stigmatize their community. 59 In addition, Native Americans are sensitive to the use of their specimens for the development of treatments by commercial entities because they perceive such treatments are often too expensive and, therefore, would be less available to them because of their economic status.…”

Section: Discussionmentioning

confidence: 99%

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

Gao

Grace

Tan

et al. 2014

Biopreservation and Biobanking

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A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research among other Asian American groups.

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“…The public also appear positive about donating genetic material to biobanks (19,58,59) and willing to supply genetic material for research purposes (60) . Reasons suggested by the public for taking up genetic testing not only include improving one's own health (61)(62)(63)(64) , but also of other family members and descendants (62)(63)(64)(65)(66) .…”

Section: What Do the Public Think About Nutrigenomics?mentioning

confidence: 99%

Promoting healthy dietary behaviour through personalised nutrition: technology push or technology pull?

et al. 2014

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The notion of educating the public through generic healthy eating messages has pervaded dietary health promotion efforts over the years and continues to do so through various media, despite little evidence for any enduring impact upon eating behaviour. There is growing evidence, however, that tailored interventions such as those that could be delivered online can be effective in bringing about healthy dietary behaviour change. The present paper brings together evidence from qualitative and quantitative studies that have considered the public perspective of genomics, nutrigenomics and personalised nutrition, including those conducted as part of the EU-funded Food4Me project. Such studies have consistently indicated that although the public hold positive views about nutrigenomics and personalised nutrition, they have reservations about the service providers' ability to ensure the secure handling of health data. Technological innovation has driven the concept of personalised nutrition forward and now a further technological leap is required to ensure the privacy of online service delivery systems and to protect data gathered in the process of designing personalised nutrition therapies.

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Public attitudes to the storage of blood left over from routine general practice tests and its use in research

Abstract: Despite its limitations, this first survey of a general practice population suggests that the majority would be willing to consider giving open-ended consent for the use of blood left over from routine clinical tests in general practice to be stored and used later for medical research.

Cited by 38 publications

References 27 publications

A trial of consent procedures for future research with clinically derived biological samples

A trial of consent procedures for future research with clinically derived biological samples

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

Promoting healthy dietary behaviour through personalised nutrition: technology push or technology pull?

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