The speculative turn in IVF: egg freezing and the financialization of fertility [0.03%]
胚胎冷冻与生育金融化：辅助生殖技术的投机转向
Lucy van de Wiel
Lucy van de Wiel
Although IVF and egg freezing have received much scholarly attention, the pivotal role of financialization in the fertility (preservation) sector remains understudied. This article discusses how processes of financialization have instigated...
Human Heritable Genome Editing and its Governance: Views of Scientists and Governance Professionals [0.03%]
人类遗传基因编辑及其治理：科学家与管理者的观点
R Jean Cadigan,Margaret Waltz,John M Conley et al.
R Jean Cadigan et al.
Heritable human genome editing has garnered significant attention in scholarly and lay media, yet questions remain about whether, when, and how heritable genome editing ought to proceed. Drawing on interviews with scientists who use genome ...
The Challenge of Recruiting Diverse Populations into Health Research: An embedded social science perspective [0.03%]
从社会科学视角看卫生研究中招募多样化人群的挑战
Simon M Outram,Sara L Ackerman,Matthew Norstad et al.
Simon M Outram et al.
Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This ex...
"It's personalized, but it's still bucket based": The promise of personalized medicine vs. the reality of genomic risk stratification in a breast cancer screening trial [0.03%]
"它具有个性化的特点，但仍基于分层Bucket划分"：在一项乳腺癌筛查试验中，基因组风险划分的现实与个性化医疗的承诺之间的对比分析报告
Jennifer Elyse James,Galen Joseph
Jennifer Elyse James
Adaptive pragmatic clinical trials offer an innovative approach that integrates clinical care and research. Yet, blurring the boundaries between research and clinical care raises questions about how clinicians and investigators balance thei...
"Idealists and capitalists": ownership attitudes and preferences in genomic citizen science [0.03%]
"理想主义者与资本家"：基因组公民科学中的所有权态度与偏好
Christi J Guerrini,Jorge L Contreras,Whitney Bash Brooks et al.
Christi J Guerrini et al.
The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop i...
"Doing Good" in U.S. Cancer Genomics? Valuation practices across the boundaries of research and care in rural community oncology [0.03%]
在美国癌症基因组学中"做好事"? 在农村社区肿瘤学中的研究和护理边界的价值实践
Katherine Weatherford Darling,Michael Kohut,Susan Leeds et al.
Katherine Weatherford Darling et al.
Genomic Tumour Testing (GTT) is an emerging site of "experimental care" in oncology [Cambrosio, Alberto, Peter Keating, Etienne Vignola-Gagné, Sylvain Besle, and Pascale Bourret. 2018a. "Extending Experimentation: Oncology's Fading Boundar...
"If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens [0.03%]
“若亲属继承了基因，那么也应该继承相关数据。”把家庭带进生物伦理讨论中
Deborah R Gordon,Barbara A Koenig
Deborah R Gordon
Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual's genome can implicate an exponential number of relatives at potential ris...
Gene drive communication: exploring experts' lived experience of metaphor use [0.03%]
基因驱动的交流：探索专家的生活经验与比喻用法
Brigitte Nerlich,Aleksandra Stelmach
Brigitte Nerlich
Metaphors have been crucial in making genetics and genomics public, from the code and the book of life to genetic scissors and gene surgery. A new field is emerging called "gene drive" - a range of controversial technologies that can potent...
Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities [0.03%]
癌症靶向治疗的获取：主流癌症慈善机构内部及外部的自我和集体倡导
Anne Kerr,Choon Key Chekar,Julia Swallow et al.
Anne Kerr et al.
As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore...
Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK [0.03%]
全民共伞：美国和英国公民项目及遗传学组织的发展
Koichi Mikami
Koichi Mikami
Social scientists have observed previously that patient support groups began to have significant influence over both research and clinical services of medical genetics in the early 2000s. This observation led to the idea of genetic citizens...