Literature DB >> 22968133

Public support and consent preference for biomedical research and biobanking in Jordan.

Mamoun Ahram1, Areej Othman, Manal Shahrouri.   

Abstract

The success of any biobank depends on a number of factors including public's view of research and the extent to which it is willing to participate in research. As a prototype of surrounding countries, public interest in research and biobanking in addition to the influence and type of informed consent for biobanking were investigated in Jordan. Data were collected as part of a national survey of 3196 individuals representing the Jordanian population. The majority of respondents (88.6%) had a positive perception of the level of research in Jordan and they overwhelmingly (98.2%) agreed to the concept of investing as a country in research. When respondents were asked if the presence of an informed consent would influence their decision to participate in biobanking, more individuals (19.8%) considered having an informed consent mechanism as a positive factor than those who considered it to have negative connotations (13.1%). However, a substantial portion (65%) did not feel it affected their decision. The majority of survey participants (64%) expressed willingness to participate in biobanking and over 90% of them preferred an opt-in consent form whether general (75.2%) or specific for disease or treatment (16.9%). These results indicate a promising ground for research and biobanking in Jordan. Educational programs or mass awareness campaigns to promote participation in biobanking and increase awareness about informed consent and individual rights in research will benefit both the scientific community as well as the public.

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Mesh:

Year:  2012        PMID: 22968133      PMCID: PMC3641386          DOI: 10.1038/ejhg.2012.213

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  22 in total

1.  Distrust, race, and research.

Authors:  Giselle Corbie-Smith; Stephen B Thomas; Diane Marie M St George
Journal:  Arch Intern Med       Date:  2002-11-25

2.  Predicting intention to biobank: a national survey.

Authors:  Christine R Critchley; Dianne Nicol; Margaret F A Otlowski; Mark J A Stranger
Journal:  Eur J Public Health       Date:  2010-10-05       Impact factor: 3.367

3.  Alternative consent models for biobanks: the new Spanish law on biomedical research.

Authors:  Antonio Casado da Rocha; José Antonio Seoane
Journal:  Bioethics       Date:  2008-07-17       Impact factor: 1.898

4.  For what am I participating? The need for communication after receiving consent from biobanking project participants: experience in Japan.

Authors:  Maiko Watanabe; Yusuke Inoue; Chiungfang Chang; Hyunsoo Hong; Izumi Kobayashi; Satoshi Suzuki; Kaori Muto
Journal:  J Hum Genet       Date:  2011-03-10       Impact factor: 3.172

5.  Building on relationships of trust in biobank research.

Authors:  M G Hansson
Journal:  J Med Ethics       Date:  2005-07       Impact factor: 2.903

6.  Public perception towards biobanking in jordan.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri
Journal:  Biopreserv Biobank       Date:  2012-08       Impact factor: 2.300

7.  Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks: a population-based study.

Authors:  Asa Kettis-Lindblad; Lena Ring; Eva Viberth; Mats G Hansson
Journal:  Scand J Public Health       Date:  2007       Impact factor: 3.021

8.  Trends in ethical and legal frameworks for the use of human biobanks.

Authors:  A Cambon-Thomsen; E Rial-Sebbag; B M Knoppers
Journal:  Eur Respir J       Date:  2007-08       Impact factor: 16.671

9.  Informed consent for biorepositories: assessing prospective participants' understanding and opinions.

Authors:  Laura M Beskow; Elizabeth Dean
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-06       Impact factor: 4.254

10.  Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: preliminary findings based on focus group interviews.

Authors:  Atsushi Asai; Motoki Ohnishi; Etsuyo Nishigaki; Miho Sekimoto; Shunichi Fukuhara; Tsuguya Fukui
Journal:  BMC Med Ethics       Date:  2002-01-09       Impact factor: 2.652

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  17 in total

1.  Knowledge, Attitudes, and Practice Regarding Genetic Testing and Genetic Counselors in Jordan: A Population-Based Survey.

Authors:  Mamoun Ahram; Majd Soubani; Lana Abu Salem; Haneen Saker; Muayyad Ahmad
Journal:  J Genet Couns       Date:  2015-04-08       Impact factor: 2.537

2.  Factors influencing public participation in biobanking.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri; Ebtihal Mustafa
Journal:  Eur J Hum Genet       Date:  2013-08-07       Impact factor: 4.246

3.  Secondary Use of Patient Tissue in Cancer Biobanks.

Authors:  Debra J H Mathews; Julia T Rabin; Katharine Quain; Eric Campbell; Deborah Collyar; Fay J Hlubocky; Steven Isakoff; Jeffrey Peppercorn
Journal:  Oncologist       Date:  2019-06-10

4.  Parental Perceptions About Informed Consent/Assent in Pediatric Research in Jordan.

Authors:  Omar F Khabour; Mahmoud A Alomari; Nihaya A Al-Sheyab
Journal:  J Empir Res Hum Res Ethics       Date:  2017-07-12       Impact factor: 1.742

5.  Current Status and Future Challenges of Biobank Research in Malaysia.

Authors:  Latifah Amin; Angelina Olesen; Zurina Mahadi; Maznah Ibrahim
Journal:  Asian Bioeth Rev       Date:  2021-03-31

Review 6.  Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.

Authors:  Flavio D'Abramo; Jan Schildmann; Jochen Vollmann
Journal:  BMC Med Ethics       Date:  2015-09-09       Impact factor: 2.652

Review 7.  Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.

Authors:  Jonas Lander; Tobias Hainz; Irene Hirschberg; Daniel Strech
Journal:  PLoS One       Date:  2014-12-03       Impact factor: 3.240

8.  Procedures of recruiting, obtaining informed consent, and compensating research participants in Qatar: findings from a qualitative investigation.

Authors:  Amal Killawi; Amal Khidir; Maha Elnashar; Huda Abdelrahim; Maya Hammoud; Heather Elliott; Michelle Thurston; Humna Asad; Abdul Latif Al-Khal; Michael D Fetters
Journal:  BMC Med Ethics       Date:  2014-02-04       Impact factor: 2.652

9.  Patient responses to research recruitment and follow-up surveys: findings from a diverse multicultural health care setting in Qatar.

Authors:  Amal Khidir; Humna Asad; Huda Abdelrahim; Maha Elnashar; Amal Killawi; Maya Hammoud; Abdul Latif Al-Khal; Pascale Haddad; Michael D Fetters
Journal:  BMC Med Res Methodol       Date:  2016-01-26       Impact factor: 4.615

10.  Perceptions and Attitudes towards Medical Research in the United Arab Emirates: Results from the Abu Dhabi Cohort Study (ADCS) Focus Group Discussions.

Authors:  Yusra El Obaid; Aisha Al Hamiz; Abdishakur Abdulle; Richard B Hayes; Scott Sherman; Raghib Ali
Journal:  PLoS One       Date:  2016-03-04       Impact factor: 3.240

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