An investigation of patients' motivations for their participation in genetics-related research.
METHODS
Qualitative interview study.


METHODS
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.


RESULTS
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.
Hallowell
N
N
Centre for Population Health Sciences, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG. nina.hallowell@ed.ac.uk
Cooke
S
S
Crawford
G
G
Lucassen
A
A
Parker
M
M
Snowdon
C
C
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000533:Altruism; D005260:Female; D036281:Genetic Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D009042:Motivation; D035842:Research Subjects / Q000523:psychology*; D011795:Surveys and Questionnaires