Literature DB >> 20559179

'As long as it helps somebody': why vulnerable people participate in research.

Susan Jane Alexander1.   

Abstract

In the past, ethics committees and researchers have avoided research among vulnerable groups because of prevailing perceptions that such research is unethical and difficult. Taking an opposite stand, this article will argue that it is in fact unethical not to research vulnerable populations because, by excluding potential participants from research endeavours, they are being deprived of the benefits to be gained from research. Albeit well meaning, people in vulnerable populations are also being subjected to the paternalistic attitudes of those who believe they know what is in the best interests of others. There is ample evidence in existing literature that, not only is research among vulnerable populations unlikely to result in harm, but there are often benefits to be gained by both participants and researchers. Apart from the generic benefits of increased knowledge and improved health interventions, specific benefits for participants might be: therapeutic, cathartic, educational, empowering, altruistic and social. In contrast, the risks associated with researching vulnerable populations appear to be minimal. Yet, there is still evidence that health care professionals and other gatekeepers continue to hinder research amongst vulnerable populations through unilateral decision-making. This article will review existing literature on the topic of research amongst vulnerable populations, as well as contribute to the argument from the author's own study on a sensitive topic.

Entities:  

Mesh:

Year:  2010        PMID: 20559179

Source DB:  PubMed          Journal:  Int J Palliat Nurs        ISSN: 1357-6321


  11 in total

1.  To waiver or not to waiver? The dilemma of informed consent in emergency department suicide prevention research.

Authors:  Nicole Hill; Lynette Joubert; Carol Harvey; Graeme Hawthorne
Journal:  Australas Med J       Date:  2011-08-31

2.  Ethics of clinical research with mentally ill persons.

Authors:  Hanfried Helmchen
Journal:  Eur Arch Psychiatry Clin Neurosci       Date:  2012-01-03       Impact factor: 5.270

3.  Bereavement in critical care: A narrative review and practice exploration of current provision of support services and future challenges.

Authors:  Natalie A Pattison; Catherine White; Nazir I Lone
Journal:  J Intensive Care Soc       Date:  2020-06-08

4.  Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

Authors:  Bridget L Hanson; Sherilyn A Faulkner; Christiane Brems; Staci L Corey; Gloria D Eldridge; Mark E Johnson
Journal:  J Empir Res Hum Res Ethics       Date:  2015-08-17       Impact factor: 1.742

5.  Recruitment planning for clinical trials with a vulnerable perinatal adolescent population using the Clinical Trials Transformative Initiative framework and principles of partner and community engagement.

Authors:  Abigail Gamble; Bettina M Beech; Chad Blackshear; Katherine L Cranston; Sharon J Herring; Justin B Moore; Michael A Welsch
Journal:  Contemp Clin Trials       Date:  2021-03-15       Impact factor: 2.226

6.  Protocol and Researcher's Relationship with Institutional Review Board.

Authors:  A E Orimadegun
Journal:  Afr J Biomed Res       Date:  2020-12

Review 7.  Dying persons' perspectives on, or experiences of, participating in research: An integrative review.

Authors:  Melissa J Bloomer; Alison M Hutchinson; Laura Brooks; Mari Botti
Journal:  Palliat Med       Date:  2017-12-13       Impact factor: 4.762

8.  A comparison of strategies to recruit older patients and carers to end-of-life research in primary care.

Authors:  Barbara Hanratty; Elizabeth Lowson; Louise Holmes; Julia Addington-Hall; Antony Arthur; Gunn Grande; Sheila Payne; Jane Seymour
Journal:  BMC Health Serv Res       Date:  2012-09-27       Impact factor: 2.655

9.  Parent-perceived isolation and barriers to psychosocial support: a qualitative study to investigate how peer support might help parents of burn-injured children.

Authors:  Jennifer Heath; Heidi Williamson; Lisa Williams; Diana Harcourt
Journal:  Scars Burn Heal       Date:  2018-03-20

10.  Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper.

Authors:  Stephanie Sivell; Hayley Prout; Noreen Hopewell-Kelly; Jessica Baillie; Anthony Byrne; Michelle Edwards; Emily Harrop; Simon Noble; Catherine Sampson; Annmarie Nelson
Journal:  BMJ Support Palliat Care       Date:  2015-12-08       Impact factor: 3.568

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