An investigation of patients’ motivations for their participation in genetics-related research

Hallowell, Nina; Cooke, Sarah; Crawford, Gillian; Lucassen, Anneke; Parker, Michael; Snowdon, Claire

doi:10.1136/jme.2009.029264

Cited by 97 publications

(127 citation statements)

References 29 publications

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“…Understanding what influenced their decision to engage and what they prospectively felt they may gain from the process (or, indeed, what potential costs they perceived) may have provided a useful comparison or contrast to the later reflections on experience. While it had previously been assumed that research participation primarily stemmed from a sense of altruism (Hallowell et al, 2010), more recent research has identified nuance and complexity in this decision and action and acknowledge personal, social and familial motivations. More recently, Sikweyiya and Jewkes (2013) have explored the interaction between altruism and self-interest and conclude the decision to participate is due to a careful consideration of the costs and benefits to themselves, as well as to others.…”

Section: Discussionmentioning

confidence: 99%

Participants’ reflections on being interviewed about risk and sexual behaviour: implications for collection of qualitative data on sensitive topics

Bourne

Robson

2013

International Journal of Social Research Methodology

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In this article, we explore how those taking part in an interview about sex and risk reflected on their participation and what, if any, impact it had on them. All 22 individuals who were interviewed in an initial study were invited to document their thoughts and feelings about the research process in a short follow-up exercise. The data relating to the 11 people who shared their reflections on the interview were subjected to a thematic analysis. The themes that emerged describe the value participants placed on honest and open interaction within neutral and non-judgmental environments. They also illustrate how being interviewed about prior behaviour can facilitate a sense-making process and might provide some degree of cathartic benefit. The findings help improve our understanding of how individuals reflect on their interview participation, which can in turn help to inform the development of ethically sensitive qualitative data collection.

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Section: Discussionmentioning

confidence: 99%

Participants’ reflections on being interviewed about risk and sexual behaviour: implications for collection of qualitative data on sensitive topics

Bourne

Robson

2013

International Journal of Social Research Methodology

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“…Patients motivations for trial involvement are multifaceted and complex, 469 and include a range of personal and social elements. 470 Patients often stated altruistic reasons and expressed the desire to help others by contributing to the furthering of clinical knowledge.…”

Section: Trial Involvementmentioning

confidence: 99%

Improving patients’ experience and outcome of total joint replacement: the RESTORE programme

Blom

Artz

Beswick

et al. 2016

Programme Grants Appl Res

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General rightsThis document is made available in accordance with publisher policies. Please cite only the published version using the reference above. Full terms of use are available: http://www.bristol.ac.uk/pure/about/ebr-terms PROGRAMME GRANTS FOR APPLIED RESEARCH VOLUME 4 ISSUE 12 AUGUST 2016 ISSN 2050 DOI 10.3310/pgfar04120Improving patients' experience and outcome of total joint replacement: the RESTORE programme Ashley W Blom, Neil Artz, Andrew D Beswick, Amanda Burston, Paul Dieppe, Karen T Elvers, Rachael Gooberman-Hill, Jeremy Horwood, Paul Jepson, Emma Johnson, Erik Lenguerrand, Elsa Marques, Sian Noble, Mark Pyke, Catherine Sackley, Gina Sands, Adrian Sayers, Victoria Wells and Vikki Wylde Improving patients' experience and outcome of total joint replacement: the RESTORE programme ISSN 2050-4330 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full PGfAR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/pgfar. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Programme Grants for Applied Research journalReports are published in Programme Grants for Applied Research (PGfAR) if (1) they have resulted from work for the PGfAR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. Programme Grants for Applied Research programmeThe Programme Grants for Applied Research (PGfAR) programme, part of the National Institute for Health Research (NIHR), was set up in 2006 to produce independent research findings that will have practical application for the benefit of patients and the NHS in the relatively near future. The Programme is managed by the NIHR Central Commissioning Facility (CCF) with strategic input from the Programme Director.The programme is a national response mode funding scheme that aims to provide evidence to improve health outcomes in England through promotion of health, prevention of ill health, and optimal disease management (including safety and quality), with particular emphasis on conditions causing significant disease burden.For more information about the PGfAR programme please visit the website: http://www.nihr.ac.uk/funding/programme-grants-forapplied-research.htm This reportThe research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0407-10070. The contractual start date was in December 2008. The final report began editorial review in September 2014 and was accepted for publication in August 2015. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accurac...

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“…25 Yet, in a study of reasons underlying donating cancer tissue in New South Wales, Australia, FIG. 3.…”

Section: Discussionmentioning

confidence: 98%

Informed Consent for Biobanking Research: Cancer Patient Recruitment from Rural Communities in Maine

Morrison

Farah

Hock³

2013

Biopreservation and Biobanking

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Biobanking research seeks to improve the diversity, availability, and quality of human specimens critical for translational research, including biospecimen collections from disadvantaged minorities. American rural whites are seldom represented in such initiatives as geographic isolation makes obtaining informed consent challenging. We report a case series of 83 newly diagnosed cancer patients, attending a rural community medical center, who consented to participate in cancer research. To enable pooling with population studies, we created a BioGeoBank using 2007 NCI and ISBER Best Practices, after a protocol approval by Eastern Maine Medical Center (EMMC) IRB and OHP HRPO. Informed consent forms were at Flesch-Kincaid 8th Grade reading level, supplemented by NCI educational brochures. Of 108 patients identified, 85 were eligible. Of these, 83 patients (49 lung cancer, 21 breast cancer, and 13 other cancers) consented to donate data, blood, and tissue specimens for future research, and maintained eligibility. Two years later, we executed a legacy protocol to transfer specimens to NCI's biorepository. Of the 69 surviving patients, 9 patients could not be contacted. All those contacted (60) agreed to provide additional data on environmental risks, and consented to specimen transfer. Self-organizing map analyses showed no evidence that age, education, income, familial susceptibility, or lifestyle factors were associated with consent to donate data or biospecimens. Cancer cases reported 1-3 co-morbid chronic diseases (mostly cardiovascular), near lifetime smoking and/or alcohol consumption; familial cancer risks, and many had a prior cancer history. Anecdotally, willingness to consent was based on altruistic hopes that research would generate knowledge to reduce cancer incidence. Our study shows that cancer patients from disadvantaged white rural communities with health disparities associated with geographic isolation are motivated to consent to participate and support biobank research.

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An investigation of patients’ motivations for their participation in genetics-related research

Cited by 97 publications

References 29 publications

Participants’ reflections on being interviewed about risk and sexual behaviour: implications for collection of qualitative data on sensitive topics

Participants’ reflections on being interviewed about risk and sexual behaviour: implications for collection of qualitative data on sensitive topics

Improving patients’ experience and outcome of total joint replacement: the RESTORE programme

Informed Consent for Biobanking Research: Cancer Patient Recruitment from Rural Communities in Maine

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