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.
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.
Authors: Magan Trottier; Wendy Roberts; Irene Drmic; Stephen W Scherer; Rosanna Weksberg; Cheryl Cytrynbaum; David Chitayat; Cheryl Shuman; Fiona A Miller Journal: J Autism Dev Disord Date: 2013-03
Authors: Rhonda G Kost; Laura N Lee; Jennifer L Yessis; Robert Wesley; Sandra Alfano; Steven R Alexander; Sylvia Baedorf Kassis; Philip Cola; Ann Dozier; Dan E Ford; Paul A Harris; Emmelyn Kim; Simon Craddock Lee; Gerri O'Riordan; Mary-Tara Roth; Kathryn Schuff; June Wasser; David K Henderson; Barry S Coller Journal: Clin Transl Sci Date: 2014-05-19 Impact factor: 4.689
Authors: Bridget L Hanson; Sherilyn A Faulkner; Christiane Brems; Staci L Corey; Gloria D Eldridge; Mark E Johnson Journal: J Empir Res Hum Res Ethics Date: 2015-08-17 Impact factor: 1.742