magdi g. shehata 1 alaa abou-zeid 2 , mohammed shams 3 henry silverman 4
DESCRIPTION
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 - PowerPoint PPT PresentationTRANSCRIPT
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,Egypt2 Public Health Dept., Faculty of Medicine, Cairo University.
3 National Cancer Institute, Cairo University4 University of Maryland School of Medicine, Maryland, USA
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
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
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
Sample Selection: Sample Size: 250 residents Inclusion Criteria:
• Age group 18-70 yrs• Both males and females
Study Design: Respondents
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
Study Design: Survey Development
Data Collection: Randomly selected 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)
Study Design: Survey Administration
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
Types of BMR considered most important
Attitudes Towards Biomedical Research (BMR)
TypeSelected
Most Important
%
Major Reason(s)
Sample collection
70To obtain information on diseases and to help others
Drug trials15To receive medication
Questionnaire15Easy to doFear of other types of BMR
Various responses included: no idea, research progress, avoid questioning, refused to participate, etc.
Reasons to volunteer for research
Attitudes Towards Biomedical Research (BMR)
Reason GivenResponse)%(
Help other patients63%
Get extra-attention/better treatment30%
Get better treatment/help others.25%
Chance to get better treatment18%
Get extra-attention12%
Attitudes Towards Biomedical Research Consent For Stored Biological Samples
Statement%Provide subjects with option to participate in future research involving biological samples
69%
Provide subjects with multiple options regarding types of future research (e.g., existing condition or other illnesses)
49%
re-contact the subject no need for re-contact: ( no restrictions)
57%
47%
Subjects should have the right to withdraw their samples27%
Subjects should be notified of results that may be relevant to their health
92%
Subjects should have the right to commercial gain52%
Attitudes Towards Biomedical Research Factors Important in Giving Permission for
Storage of Biological Samples
Factor%Type of disease to be studied88%
Type of sponsoring entity86%
Whether samples will be sent outside Egypt44%
Whether samples will be sent to Western Country40%
Whether samples will be sent to Arabian country47%
Whether samples will be used for genetic research51%
Attitudes Towards Biomedical Research (BMR) Transfer and Ownership of Samples
If samples are transferred, a portion must be left in the source country
94%
If samples are transferred, then the source country should have access to resulting material products
90%
If the researcher locates to another country, who should own the samples?
a. researcher b. source institution
c. government of source institution d. government of recipient institution
e. subject who donated the sample
14%
59%
16%
<1%
11%
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 A- Participation in BMR
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
Recommendations
1 .Enhance educational efforts regarding
meaning and value of research2 .Further studies to understand reasons for
a desire for re-contact
3 .Determine whether results are
generalizable to other sectors in Egypt
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.