Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey

Abou‐Zeid, A. A.; Silverman, Henry; Shehata, Mohamed; Shams, Mohamed; Elshabrawy, Mervat; Hifnawy, Tamer; Rahman, Safa Abdel; Galal, Bahiga; Sleem, Hany; Mikhail, Nabiel; Moharram, Nadia

doi:10.1136/jme.2009.033100

Cited by 46 publications

(75 citation statements)

References 29 publications

(24 reference statements)

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“…However, the finding that a large proportion of the public do not want their HBSs used for research outside the UK is intriguing. Our qualitative data show that concerns exist around regulation and commodification of HBSs, findings supported elsewhere in the literature 40 41. To address these concerns, potential donors should be provided with information related to the specific issues that relate to those countries where HBSs are likely to be sent.…”

Section: Discussionsupporting

confidence: 87%

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

Lewis

Clotworthy²,

Hilton

et al. 2013

BMJ Open

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ObjectiveA mixed methods study exploring the UK general public's willingness to donate human biosamples (HBSs) for biomedical research.SettingCross-sectional focus groups followed by an online survey.ParticipantsTwelve focus groups (81 participants) selectively sampled to reflect a range of demographic groups; 1110 survey responders recruited through a stratified sampling method with quotas set on sex, age, geographical location, socioeconomic group and ethnicity.Main outcome measures(1) Identify participants’ willingness to donate HBSs for biomedical research, (2) explore acceptability towards donating different types of HBSs in various settings and (3) explore preferences regarding use and access to HBSs.Results87% of survey participants thought donation of HBSs was important and 75% wanted to be asked to donate in general. Responders who self-reported having some or good knowledge of the medical research process were significantly more likely to want to donate (p<0.001). Reasons why focus group participants saw donation as important included: it was a good way of reciprocating for the medical treatment received; it was an important way of developing drugs and treatments; residual tissue would otherwise go to waste and they or their family members might benefit. The most controversial types of HBSs to donate included: brain post mortem (29% would donate), eyes post mortem (35%), embryos (44%), spare eggs (48%) and sperm (58%). Regarding the use of samples, there were concerns over animal research (34%), research conducted outside the UK (35%), and research conducted by pharmaceutical companies (56%), although education and discussion were found to alleviate such concerns.ConclusionsThere is a high level of public support and willingness to donate HBSs for biomedical research. Underlying concerns exist regarding the use of certain types of HBSs and conditions under which they are used. Improved education and more controlled forms of consent for sensitive samples may mitigate such concerns.

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Section: Discussionsupporting

confidence: 87%

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

Lewis

Clotworthy²,

Hilton

et al. 2013

BMJ Open

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“…Studies from developing countries have shown that RECs face challenges that include lack of member diversity, inadequate training of members, scarcity of human and capital resources, and absence of national regulations (Abou-Zeid, 2010; El-Dessouky et al, 2011; Kandeel et al, 2011; Lakshmi, 2012; Office for Human Research Protections [OHRP], 2010). Similar findings have also been shown for RECs in Egypt, where more than 40 RECs have registered with the Office for Human Research Protections (OHRP, 2010).…”

mentioning

confidence: 99%

Perspectives of Egyptian Research Ethics Committees regarding Their Effective Functioning

Matar

Silverman

2013

Journal of Empirical Research on Human Research Ethics

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The recent increase in research in the Middle East has been associated with the establishment of research ethics committees (RECs). Our aim was to obtain perspectives of RECs regarding the challenges that impede their effective functioning. We conducted in-depth interviews using a semi-structured interview guide. We transcribed and analyzed the interviews to uncover major themes and subthemes. We identified the following themes: membership composition; training needs of members; availability of human and capital resources; role of the national government; concerns with the informed consent process; government scrutiny of research; investigator-related issues; and concerns with transfer of biological samples to other countries. Our interview study revealed several barriers that need to be considered by appropriate stakeholders to enhance adequate functioning of RECs.

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“…Of these, 7 studies defined one criterion such as minimum age or language spoken, and the remaining 33 studies defined two or more criteria, such as ‘adult Egyptian patients', excluding those ‘who were critically ill or with diminished decisional capacity' [37]. …”

Section: Resultsmentioning

confidence: 99%

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

Lander

Hainz

Hirschberg

et al. 2016

Public Health Genomics

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Background: Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making processes. For PIAs to capture a population's preferences (e.g. on issues in whole genome sequencing, biobanks or genome editing), a central methodological requirement is to involve a sufficiently representative subgroup of the general public. While the existing literature focusses on theoretical and normative aspects of ‘representation', this study assesses empirically how such considerations are implemented in practice. It evaluates how PIA reports describe representation objectives, the recruitment process and levels of representation achieved. Methods: PIA reports were included from a systematic literature search if they directly reported a PIA conducted in a relevant discipline such as genomics, biobanks, biotechnology or others. PIA reports were analyzed with thematic text analysis. The text analysis was guided by an assessment matrix based on PIA-specific guidelines and frameworks. Results: We included 46 relevant reports, most focusing on issues in genomics. 27 reports (59%) explicitly described representation objectives, though mostly without adjusting eligibility criteria and recruiting methods to the specific objective. 11 reports (24%) explicitly reported to have achieved the intended representation; the rest either reported failure or were silent on this issue. Conclusion: Representation of study samples in PIAs in biomedical research and innovation is currently not reported systematically. Improved reporting on representation would not only improve the validity and value of PIAs, but could also contribute to PIA results being used more often in relevant policy and decision-making processes.

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Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey

Cited by 46 publications

References 29 publications

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

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

Perspectives of Egyptian Research Ethics Committees regarding Their Effective Functioning

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

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