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Attitudes Of An Egyptian Population Living In

Remote Area Towards Research Participation

And Storage Of Biological Specimens

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

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

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

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

 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

RESULTS

Attitudes Towards Biomedical Research (BMR)

Types of BMR considered most important

Most Major Reason(s) Important %

Type Selected

To obtain information on diseases and to help others

Sample 70 collection

Drug trials 15 To receive medication

Easy to do Fear of other types of BMR

Questionnaire 15

Various responses included: no idea, research progress, avoid questioning, refused to participate, etc.

Attitudes Towards Biomedical Research Consent For Stored Biological Samples

Statement %

Provide subjects with option to participate in future 69% research involving biological samples

Provide subjects with multiple options regarding types of 49% future research (e.g., existing condition or other illnesses)

57% 47%

re-contact the subject no need for re-contact: ( no restrictions)

Subjects should have the right to withdraw their samples 27%

Subjects should be notified of results that may be relevant 92% to their health

Subjects should have the right to commercial gain 52%

Attitudes Towards Biomedical Research

Factors Important in Giving Permission for Storage of

Biological Samples

Factor %

Type of disease to be studied 88%

Type of sponsoring entity 86% Whether samples will be sent outside Egypt 44%

Whether samples will be sent to Western Country 40%

Whether samples will be sent to Arabian country 47%

Whether samples will be used for genetic research 51%

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

Summary

B- 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

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.