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Magdi G. Shehata 1 Alaa Abou-Zeid 2 , Mohammed Shams 3 Henry Silverman 4

Attitudes Of An Egyptian Population Living In Remote Area Towards Research Participation And Storage Of Biological Specimens. Magdi G. Shehata 1 Alaa Abou-Zeid 2 , Mohammed Shams 3 Henry Silverman 4 1 Department of Entomology, Faculty of Science, Ain Shams University, Cairo,Egypt

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Magdi G. Shehata 1 Alaa Abou-Zeid 2 , Mohammed Shams 3 Henry Silverman 4

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  1. Attitudes Of An Egyptian Population Living In Remote Area Towards Research Participation And Storage Of Biological Specimens Magdi G. Shehata1 Alaa Abou-Zeid2, Mohammed Shams3 Henry Silverman4 1 Department of Entomology, Faculty of Science, Ain Shams University, Cairo,Egypt 2 Public Health Dept., Faculty of Medicine, Cairo University. 3 National Cancer Institute, Cairo University 4 University of Maryland School of Medicine, Maryland, USA

  2. Introduction • Increasing importance of using biological stored and/or newly collected tissue samples for Genetic and Non-Genetic researches. • Ethical issues involved with: • Participants’ preferences for participation • Consent issues • Collaborations and ownership

  3. Why the potential opinions of human subjects are important to conduct biomedical research? To enhance: • Process of informed consent • Trust between researchers and human subjects

  4. Objectives To determine the attitudes of an Egyptian population living in remote area towards: • Willingness to participate in biomedical research • Willingness to provide biological samples for future research • Preferences for consent for donating biological samples. • Types of conditions placed on collected samples

  5. Study Design: Setting • Population of a remote village in Rafah city (NE Sinai) near borders of Palestine. • Bedwins • Local and sporadic workers from other governorates • Focus of university field research on epidemiology and transmission of cutaneous leishmaniasis

  6. Study Design: Respondents Sample Selection: • Sample Size: 250 residents • Inclusion Criteria: • Age group 18-70 yrs • Both males and females

  7. Study Design: Survey Development • Survey questionnaire was designed to cover the following domains: • Attitudes towards participation in medical research • Attitudes regarding consent for unspecified future research on biological human stored samples. • Preference for collaborating research in which human biological samples to be sent to foreign collaborating centers. • Rights of local and collaborating scientists • Survey questionnaire was translated into plain and understandable Arabic format • Pre-testing of survey with subsequent revisions

  8. Study Design: Survey Administration Data Collection: • Randomlyselected individuals from each sector of the village (3 sectors) Data Collectors: • The principal investigator (PI) • Assistants (trained on the questionnaire) • Two nurses from the local health unit Data Management: • Data entry into MS excel file • Statistical analysis (SPSS-version 13)

  9. RESULTS • Response Rate: • 229 of 260 participants completed the survey • Gender: • Male/Female: (3/1) • Education: • Illiteracy: (35%) • Poor education (60%) • Employment: • 23% unemployed • 69% working • 8% landlord

  10. Attitudes Towards Biomedical Research (BMR) Types of BMR considered most important Various responses included: no idea, research progress, avoid questioning, refused to participate, etc.

  11. Attitudes Towards Biomedical Research (BMR) Reasons to volunteer for research

  12. Attitudes Towards Biomedical Research Consent For Stored Biological Samples

  13. Attitudes Towards Biomedical Research Factors Important in Giving Permission for Storage of Biological Samples

  14. Attitudes Towards Biomedical Research (BMR)Transfer and Ownership of Samples

  15. Summary A- Participation in BMR • High level of support by Egyptians for research • Major reasons not to participate in research • Fear and lack of trust • Lack of comprehension • Social stigma • High level of support for storage of biological samples for future research

  16. SummaryB- Biological Samples • Desire for knowledge on the type of future research • Most would like to be re-contacted for future research • Most would like to retain the right to commercial gain • Ownership belongs to home country institution

  17. Recommendations 1. Enhance educational efforts regarding meaning and value of research 2. Further studies to understand reasons for a desire for re-contact 3. Determine whether results are generalizable to other sectors in Egypt

  18. Acknowledgement • MOHP-Local Health Authority in N Sinai • RTC-Ain Shams University • Health Research Ethics Training Initiative program in Egypt (HRETIE). This project is funded by the NIH- Fogarty International foundation.

  19. Thank You

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