RT Journal Article
SR Electronic
T1 An investigation of patients’ motivations for their participation in genetics-related research
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 37
OP 45
DO 10.1136/jme.2009.029264
VO 36
IS 1
A1 N Hallowell
A1 S Cooke
A1 G Crawford
A1 A Lucassen
A1 M Parker
A1 C Snowdon
YR 2010
UL http://jme.bmj.com/content/36/1/37.abstract
AB 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.