An investigation of patients' motivations for their participation in genetics-related research
An investigation of patients' motivations for their participation in genetics-related research
Design: Qualitative interview study.
Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences.
Findings: Interviewees gave a range of explanations for research participation. These were categorised as (a) social—research participation benefits the wider society by progressing science and improving treatment for everyone; (b) familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and (c) personal—research participation provides therapeutic or non-therapeutic benefits for oneself.
Conclusions: We discuss the distinction drawn between motives for research participation focused upon self (personal) and others (familial/social), and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.
37-45
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Cooke, S.
d5031b11-137c-4b03-8115-5a1d334bfa62
Crawford, G.
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, A.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, M.
f35e48ca-14b4-4c90-b172-f24c84861250
Snowdon, C.
25ed88bc-a123-4c58-aa31-7955153f55cb
January 2010
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Cooke, S.
d5031b11-137c-4b03-8115-5a1d334bfa62
Crawford, G.
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, A.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, M.
f35e48ca-14b4-4c90-b172-f24c84861250
Snowdon, C.
25ed88bc-a123-4c58-aa31-7955153f55cb
Hallowell, N., Cooke, S., Crawford, G., Lucassen, A., Parker, M. and Snowdon, C.
(2010)
An investigation of patients' motivations for their participation in genetics-related research.
Journal of Medical Ethics, 36 (1), .
(doi:10.1136/jme.2009.029264).
Abstract
Design: Qualitative interview study.
Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences.
Findings: Interviewees gave a range of explanations for research participation. These were categorised as (a) social—research participation benefits the wider society by progressing science and improving treatment for everyone; (b) familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and (c) personal—research participation provides therapeutic or non-therapeutic benefits for oneself.
Conclusions: We discuss the distinction drawn between motives for research participation focused upon self (personal) and others (familial/social), and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.
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Published date: January 2010
Additional Information:
We discuss the distinction drawn between motives for research participation focused upon self (personal) and others (familial/social), and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account.
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Local EPrints ID: 142603
URI: http://eprints.soton.ac.uk/id/eprint/142603
ISSN: 1473-4257
PURE UUID: f984bee4-342d-4f80-9677-20976cc5fba1
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Date deposited: 01 Apr 2010 08:56
Last modified: 14 Mar 2024 02:46
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Author:
N. Hallowell
Author:
S. Cooke
Author:
M. Parker
Author:
C. Snowdon
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