Mary Camp,John Sadler
Mary Camp
Purpose: Moral distress occurs when one identifies an ethically appropriate course of action but cannot carry it out. In this conceptualization, medical students may be particularly vulnerable to moral distress, but the l...
A content analysis of the views of genetics professionals on race, ancestry, and genetics [0.03%]
遗传学专业人士关于种族、祖先和遗传的观点内容分析
Sarah C Nelson,Joon-Ho Yu,Jennifer K Wagner et al.
Sarah C Nelson et al.
Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics prof...
Genes wide open: Data sharing and the social gradient of genomic privacy [0.03%]
基因全开放：数据共享与基因隐私的社会梯度
Tobias Haeusermann,Marta Fadda,Alessandro Blasimme et al.
Tobias Haeusermann et al.
This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on i...
Assessing Patient Perspectives on Receiving Bad News: A Survey of 1337 Patients With Life-Changing Diagnoses [0.03%]
对生命改变性诊断的患者进行调查以评估其对于坏消息的态度（1337例）
Reza D Mirza,Melody Ren,Arnav Agarwal et al.
Reza D Mirza et al.
Background: Guidelines for breaking bad news are largely directed at and validated in oncology patients, based on expert opinion, and neglect those with other diagnoses. We sought to determine whether existing guidelines ...
Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences [0.03%]
应否向生物样本库中的癌症患者及其家属提供研究结果？一种关于患者和家庭成员偏好的混合方法研究
Deborah R Gordon,Carmen Radecki Breitkopf,Marguerite Robinson et al.
Deborah R Gordon et al.
Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands' biological relatives. Researchers question their obligations to return findings not only to part...
Data and tissue research without patient consent: A qualitative study of the views of research ethics committees in New Zealand [0.03%]
新西兰不经患者同意进行的数据和组织研究：对研究伦理委员会观点的定性研究
Angela Ballantyne,Andrew Moore
Angela Ballantyne
Purpose: Secondary use of clinical tissue and data is an increasingly important platform for health research. Many jurisdictions allow research ethics committees (RECs) or institutional review boards (IRBs) the flexibilit...
Observational Study
AJOB empirical bioethics. 2018 Jul-Sep;9(3):143-153. DOI:10.1080/23294515.2018.1518938 2018
"I want us to be a normal family": Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients [0.03%]
"我想我们成为普通的家庭吧":论美国卵子捐赠者和受赠者匿名功能理解的问题
Inmaculada de Melo-Martín,Lisa R Rubin,Ina N Cholst
Inmaculada de Melo-Martín
Background: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more c...
Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments [0.03%]
精神卫生从业人员与普通民众对两种精神病学治疗的哲学态度比较研究
Laura Yenisa Cabrera,Marisa Brandt,Rachel McKenzie et al.
Laura Yenisa Cabrera et al.
Background: Psychiatric interventions are a contested area in medicine, not only because of their history of abuses, but also because their therapeutic goal is to affect emotions, thoughts, beliefs, and behaviors that are...
Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research [0.03%]
有关涉及缺乏行为能力的成人受试者的科研中的代理决策制定的行为理论研究的系统性综述（框架综合法）
Victoria Shepherd,Kerenza Hood,Mark Sheehan et al.
Victoria Shepherd et al.
Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy d...
Reliance agreements and single IRB review of multisite research: Concerns of IRB members and staff [0.03%]
依靠协议和单一IRB审查的多中心研究：IRB成员与工作人员的担忧
Charles W Lidz,Ekaterina Pivovarova,Paul Appelbaum et al.
Charles W Lidz et al.
The new National Institutes of Health (NIH) Policy on the Use of a Single Institutional Review Board (sIRB) for Multi-Site Research was adopted primarily to simplify and speed the review of complex multisite clinical trials. However, speedi...