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

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.

1473-4257
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
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), 37-45. (doi:10.1136/jme.2009.029264).

Record type: Article

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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More information

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.

Identifiers

Local EPrints ID: 142603
URI: http://eprints.soton.ac.uk/id/eprint/142603
ISSN: 1473-4257
PURE UUID: f984bee4-342d-4f80-9677-20976cc5fba1
ORCID for A. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 01 Apr 2010 08:56
Last modified: 14 Mar 2024 02:46

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Contributors

Author: N. Hallowell
Author: S. Cooke
Author: G. Crawford
Author: A. Lucassen ORCID iD
Author: M. Parker
Author: C. Snowdon

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