The Underdeveloped "Gift": Ethics in Implementing Precision Medicine Research.
The Underdeveloped "Gift": Ethics in Implementing Precision Medicine Research.
复制标题
DOI：
10.1080/15265161.2021.1891352
复制
发表时间：
2021-04
期刊：
影响因子：
--
通讯作者：
McGowan ML
中科院分区：
文献类型：
--
作者：
Blumling AA;Childers-Buschle KE;Lynch JA;Myers MF;McGowan ML
Lee（2021）强调需要更好地理解精准医学所隐含的研究人员和参与者之间的道德关系，“礼物”框架为生物伦理学提供了解决正义和公平的系统性问题的途径。Lee呼吁研究人员利用Marcel Mauss（2002）的“礼物”关系概念来解决医学和研究界的失败，这是对关于精准医学中互惠和责任的对话的重要贡献，但必须进一步扩展。具体来说，李的呼吁的实际应用是复杂的礼物赠送者/研究人员的关系，参与者和社区的生物医学研究的经验，并没有充分考虑参与者，研究人员和机构之间的道德关系的研究议程的不同理解或期望。为了说明这些复杂性，我们将借鉴我们自己建立生物库的经验（巴恩斯等人，2012年），参与者驱动的基因组研究风气（McGowan et al. 2017）和基因组研究结果的回归研究（Myers et al. 2020）。根据我们过去的经验，我们今年将启动一项精准医学临床试验，探索13-21岁的年轻人如何选择是否接受基因组检测结果以及接受哪些基因组检测结果。我们将从当地城市社区招募一个前瞻性队列，以及从现有儿科医院生物库招募一个队列。在准备启动这项临床试验的过程中，我们发现了两种类型的互动的复杂性，而Mauss的礼物框架还没有得到充分的发展：平衡机构和社区成员关于建立生物库的愿望，以及解决研究人员和我们希望参与的服务不足的社区之间的权力动态。我们在其他地方已经论证过，
Lee (2021) emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics an avenue to address systemic issues of justice and equity. Lee’s call for researchers to address failures of the medical and research community, drawing on Marcel Mauss’s (2002) concept of the “gift” relationship, is an important contribution to the conversation about reciprocity and responsibility in precision medicine, but it must be extended further. Specifically, the practical application of Lee’s call is complicated by differing understandings or expectations of the gift-giver/researcher relationship, participants’ and communities’ prior experiences with biomedical research, and research agendas that do not adequately account for the moral relationships between participants, researchers, and institutions. To illustrate these complexities, we will draw upon our own experiences with establishing a biobank (Barnes et al. 2012), participant-driven genomic research ethos (McGowan et al. 2017) and a return of genomic research results study (Myers et al. 2020).Drawing from our past experiences, we are launching a precision medicine clinical trial this year to explore how youth ages 13–21 make choices about whether and which genomic testing results to receive. We will recruit a prospective cohort from the local, urban community, as well as a cohort from an existing pediatric hospital biobank. In preparing to launch this clinical trial, we have found complexities in two types of interactions for which Mauss’s framing of the gift is underdeveloped: balancing institutional and community members’ desires regarding establishing a biobank and addressing power dynamics between researchers and the underserved communities we hope to engage. We have argued elsewhere that it is
登录
查看更多内容
影响因子：
1.9
作者：
Streicher, Samantha A.;Sanderson, Saskia C.;Richardson, Lynne D.
通讯作者：
Richardson, Lynne D.
DOI：
10.1080/15265161.2010.494223
发表时间：
2010-08
期刊：
The American journal of bioethics : AJOB
影响因子：
--
作者：
Lynch J;Mitchell M
通讯作者：
Mitchell M
影响因子：
2.9
作者：
Busby, Helen
通讯作者：
Busby, Helen
影响因子：
7.6
作者：
Myers, Melanie F.;Martin, Lisa J.;Prows, Cynthia A.
通讯作者：
Prows, Cynthia A.
DOI：
10.1080/15265161.2020.1851813
发表时间：
2021-04
期刊：
The American journal of bioethics : AJOB
影响因子：
--
作者：
Lee SS
通讯作者：
Lee SS