Beyond Individual Privacy: A Layered Diagnostic Model for Analyzing Genetic Data Governance [0.03%]
超越个体隐私：分析基因数据治理的分层诊断模型
Ruoxin Su
Ruoxin Su
Human genetic data are simultaneously deeply personal, familial, and strategically valuable, raising regulatory challenges that individual-centered privacy frameworks only partially address. This is highlighted by the recent high-profile ba...
Conceptualizing Reproductive Donation: Developing Models of Egg and Sperm Donation and the Implications for Regulating Information Giving [0.03%]
论辅助生殖捐献：构建卵子和精子捐赠模式及规范信息传递的含义
Lucy Frith
Lucy Frith
There is little consensus on how to regulate information giving in reproductive donation - using donated gametes (eggs, sperm) to have children. Should gamete donors be anonymous or should donor-conceived individuals have access to their do...
Adam Cureton
Adam Cureton
This memorial essay introduces the Journal of Law, Medicine, and Ethics special issue on supported decision-making in research by honoring David T. Wasserman (1953-2025), a major organizer of the NIH workshop from which the issue emerged an...
Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent [0.03%]
智力障碍成人与精准医疗研究同意书：利用支持决策促进第一人称同意书
Katherine McDonald,Robert Olick,Robert Dinerstein et al.
Katherine McDonald et al.
Scientific discoveries and precision medicine research, especially efforts to identify individually tailored approaches to healthcare considering individual variability in genetics, environmental, and lifestyle factors, have the potential t...
International Ethical Principles for Banking and Secondary Research Use of Human Biospecimens and Associated Data: The Seattle Principles [0.03%]
银行业和二次人类生物样本及衍生数据研究国际伦理原则：西雅图原则
Mark Barnes,Marianna Bledsoe,Mayumi Kusunose et al.
Mark Barnes et al.
International access to and sharing of biospecimens is critical to answer important questions about complex diseases, and to ensure the diversity in biospecimen collection necessary to advance science and develop therapies that benefit all....
Supported Decision-Making for Clinical Research Participants with Mental Illness [0.03%]
精神疾病临床试验受试者的辅助决策制度研究
Benjamin C Silverman,Willyanne DeCormier Plosky,David H Strauss et al.
Benjamin C Silverman et al.
Federal disability anti-discrimination laws expect clinical trials to render study processes and sites accessible to potential participants, including through the provision of reasonable accommodations. Nonetheless, people with disabilities...
The Value of Non-Domination in Supported Decision-Making for Research Participation for Individuals with Intellectual and Developmental Disabilities [0.03%]
关于智力障碍和发育障碍个体参与研究的辅助决策支持中的非统治价值论
Dana Howard,Allison M McCarthy
Dana Howard
This paper argues that research ethics for individuals with intellectual and developmental disabilities must attend to the value of non-domination. First, we highlight the role of domination in the history of abusive research practices agai...
A Federal Policy and Legal Framework to Help Address Health Disparities Experienced by People with Intellectual and Other Cognitive Disabilities: Clinical Research and Supported Decision-Making [0.03%]
美国针对智力障碍和其他认知障碍人士所面临医疗不平等的政策与法律框架：临床研究和辅助决策
Alison Barkoff
Alison Barkoff
People with intellectual and other cognitive disabilities often face barriers to participating in clinical research, particularly related to the informed consent process. Recent federal policy and legal efforts have advanced strategies to a...
"I Want to Be Interdependent": An Exploratory Study on the Use of Supported Decision-Making for People with Serious Mental Illness [0.03%]
“我想平等互助”——关于严重精神疾病患者使用辅助决策模式的探索性研究
Fitore Hyseni,Jonathan G Martinis,Fatma Altunkol Wise et al.
Fitore Hyseni et al.
This exploratory study aimed to empower people with serious mental illness to create and implement supported decision-making plans and study the impact on their decision-making process. We found that study participants were able to: (1) use...
Jasmine Gunkel,David Wasserman,Leslie Francis
Jasmine Gunkel
In recent decades, theorists of disability rights have made the moral and legal case for supported decision-making. Whereas surrogate decision-making, the long upheld legal standard, looks to a third party to make a decision for a person de...