An investigation of patients' motivations for their participation in genetics-related research
An investigation of patients' motivations for their participation in genetics-related research
复制标题
DOI：
10.1136/jme.2009.029264
复制
发表时间：
2010-01-01
影响因子：
4.1
通讯作者：
Snowdon, C.
中科院分区：
文献类型：
--
作者：
Hallowell, N.;Cooke, S.;Snowdon, C.
设计：定性访谈研究。参与者：对在英国地区癌症遗传学诊所就诊的 59 名有癌症家族史的患者进行采访，了解他们当前和以前的研究经历。调查结果：受访者对参与研究给出了一系列解释。这些被归类为（a）社会研究参与通过进步科学和改善每个人的待遇而造福更广泛的社会； (b) 家庭研究参与可以改善医疗保健并使参与者家庭的当前或后代受益；结论：我们讨论了关注自我（个人）和他人（家庭/社会）的研究参与动机之间的区别，并观察到个人、社会和家庭动机可以被视为相互依赖。例如，为了造福他人（特别是亲戚）而参与的研究也可能为自己带来许多个人利益，例如使参与者感到他们已经履行了社会或家庭义务。我们认为有必要从简单、静态、个性化的研究参与概念转向更复杂、动态和本质上的社会账户。
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.