Volunteer research subjects' experience of participation in research on a novel diagnostic technology for breast cancer.

Qualitative Health Research
Norma Morris, Margaret Schneider

Abstract

Although volunteer research subjects play a crucial role in the development of new health technologies, there have been relatively few in-depth studies of what participation in research means to them, and how they manage and make sense of the research encounter. Using constructivist perspectives we analyze data from 15 United States-based women taking part in tests of prototype instrumentation with potential for cancer diagnosis, comparing their responses with findings from a larger study (using the same interview methodology) on United Kingdom-based women participating in a similar program. For both groups the prime concerns emerging at interview related to the social rather than the physical challenges of participation. Both deployed similar discursive strategies to manage these tensions.We suggest that, at least within the limits of the kind of low-risk, nontherapeutic research studied, lessons can be drawn for research management, particularly the key role of the researcher-researched working relationship in assuring mutually satisfactory outcomes.

References

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Apr 5, 2001·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·S OliverJ Gabbay
Nov 1, 1993·Social Studies of Science·Michael Mulkay
Jun 24, 2005·Science As Culture·Richard Tutton
Aug 9, 2005·Social Science & Medicine·Norma Morris, Brian Bàlmer
Nov 3, 2006·Qualitative Health Research·Elizabeth PeelJulia Lawton
Feb 20, 2009·Qualitative Health Research·Tineke A AbmaGuy A M Widdershoven
Nov 1, 2003·Sociology of Health & Illness·Oonagh Corrigan

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Citations

May 16, 2014·Brain Injury : [BI]·Alice TheadomKathryn M McPherson
Jan 26, 2013·British Journal of Pharmacology·F Sánchez-JiménezM A Medina
Jan 4, 2012·Clinical and Translational Science·Rhonda G KostUNKNOWN Research Participant Perception Survey Focus Group Subcommittee
Jul 22, 2009·Sociology of Health & Illness·Victoria Armstrong, Norma Morris
Aug 5, 2015·Health Technology Assessment : HTA·T Justin ClarkJane P Daniels
Feb 13, 2015·Journal of Bioethical Inquiry·Claudia SlegersBebe Loff
Dec 18, 2013·Social Science & Medicine·Susan M Cox, Michael McDonald
Jun 4, 2019·The Journal of Nervous and Mental Disease·Ivan Shin Kai ThongLynsey Gregg

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