Literature DB >> 19537434

Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area.

Joseph Mfutso-Bengo1, Francis Masiye, Malcolm Molyneux, Paul Ndebele, Abdullah Chilungo.   

Abstract

Participants refusal to take part in research is an unpleasant experience that investigators face. This paper highlights some of the reasons why people from resource-poor settings refuse to take part in health research. This paper also highlights standards which investigators can adopt to avoid unnecessary refusals and at the same time ensure that individuals have the right to participate and freedom to refuse. Our objective was to explore reasons why people refuse to join research studies. We conducted focus group discussions with people who had refused to take part in a number of biomedical research studies but agreed to be interviewed in this study. The study was undertaken in the peri-urban and urban areas of Blantyre district; Bangwe, Mpemba and Madziabango. We found nine key factors that influence people to refuse to participate in biomedical research. The factors are failure to follow traditional customs, lack of study benefits, superstition, poor informed consent procedures, ignorance of health research, fear of strangers, lack of cultural sensitivity, poor timing, and previous bad research experience. People refuse to participate in health research for a number of reasons which can be overcome if researchers embark on community engagement before implementing their studies.

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Year:  2008        PMID: 19537434      PMCID: PMC3345674          DOI: 10.4314/mmj.v20i2.10958

Source DB:  PubMed          Journal:  Malawi Med J        ISSN: 1995-7262            Impact factor:   0.875


  11 in total

1.  Ethical issues in research on the treatment of adolescent substance abuse disorders.

Authors:  J L Brody; H B Waldron
Journal:  Addict Behav       Date:  2000 Mar-Apr       Impact factor: 3.913

2.  Ethical issues in the design and conduct of clinical trials in developing countries.

Authors:  H T Shapiro; E M Meslin
Journal:  N Engl J Med       Date:  2001-07-12       Impact factor: 91.245

Review 3.  Ethics in international health research: a perspective from the developing world.

Authors:  Zulfiqar Ahmed Bhutta
Journal:  Bull World Health Organ       Date:  2002       Impact factor: 9.408

4.  Reflections and recommendations on research ethics in developing countries.

Authors:  S R Benatar
Journal:  Soc Sci Med       Date:  2002-04       Impact factor: 4.634

5.  A study of non-response in a questionnaire survey of parents' views of paediatric care.

Authors:  B M Ygge; J E Arnetz
Journal:  J Nurs Manag       Date:  2004-01       Impact factor: 3.325

6.  Therapeutic misconception and the appreciation of risks in clinical trials.

Authors:  Charles W Lidz; Paul S Appelbaum; Thomas Grisso; Michelle Renaud
Journal:  Soc Sci Med       Date:  2004-05       Impact factor: 4.634

Review 7.  The effects of non-response on statistical inference.

Authors:  J Jones
Journal:  J Health Soc Policy       Date:  1996

8.  The Village Man who became a Doctor.

Authors:  Bridon M'baya
Journal:  Malawi Med J       Date:  2007-06       Impact factor: 0.875

9.  Sensation seeking amongst healthy volunteers participating in phase I clinical trials.

Authors:  M Farré; X Lamas; J Camí
Journal:  Br J Clin Pharmacol       Date:  1995-04       Impact factor: 4.335

10.  Community engagement in epidemiological research.

Authors:  Jessica N Sapienza; Giselle Corbie-Smith; Sarah Keim; Alan R Fleischman
Journal:  Ambul Pediatr       Date:  2007 May-Jun
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  21 in total

1.  Tailoring information provision and consent processes to research contexts: the value of rapid assessments.

Authors:  Susan Bull; Bobbie Farsides; Fasil Tekola Ayele
Journal:  J Empir Res Hum Res Ethics       Date:  2012-02       Impact factor: 1.742

2.  Access and use of human tissues from the developing world: ethical challenges and a way forward using a tissue trust.

Authors:  Claudia I Emerson; Peter A Singer; Ross E G Upshur
Journal:  BMC Med Ethics       Date:  2011-01-25       Impact factor: 2.652

3.  Managing community engagement in research in Uganda: insights from practices in HIV/AIDS research.

Authors:  John Barugahare; Nancy E Kass
Journal:  BMC Med Ethics       Date:  2022-06-14       Impact factor: 2.834

4.  Consent and community engagement in diverse research contexts.

Authors: 
Journal:  J Empir Res Hum Res Ethics       Date:  2013-10       Impact factor: 1.742

5.  Facilitators and barriers to successful recruitment into a large comparative effectiveness trial: a qualitative study.

Authors:  Stephanie Behringer-Massera; Terysia Browne; Geny George; Sally Duran; Andrea Cherrington; M Diane McKee
Journal:  J Comp Eff Res       Date:  2019-08-01       Impact factor: 1.744

6.  Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya.

Authors:  Scholastica M Zakayo; Mary N Kimani; Gladys Sanga; Rita Njeru; Anderson Charo; James A Berkley; Judd L Walson; Maureen Kelley; Vicki Marsh; Sassy Molyneux
Journal:  J Empir Res Hum Res Ethics       Date:  2021-03-25       Impact factor: 1.978

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.  Participation of people living in rural areas of Eskisehir province in field researches, and factors affecting their rates of participation.

Authors:  Ozkan Ozay; Emine Ayhan; Muhammed Fatih Onsuz; Burhanettin Isikli; Selma Metintas
Journal:  North Clin Istanb       Date:  2015-04-24

9.  An audit of consent refusals in clinical research at a tertiary care center in India.

Authors:  S J Thaker; B H Figer; N J Gogtay; U M Thatte
Journal:  J Postgrad Med       Date:  2015 Oct-Dec       Impact factor: 1.476

10.  Public engagement in Malawi through a health-talk radio programme ' Umoyo nkukambirana': A mixed-methods evaluation.

Authors:  Deborah Nyirenda; Tamara Chipasula Makawa; Greyson Chapita; Chisomo Mdalla; Mzati Nkolokosa; Thomasena O'byrne; Robert Heyderman; Nicola Desmond
Journal:  Public Underst Sci       Date:  2016-06-30
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