A general obligation to make aggregate research results available to participants has been widely supported in the bioethics literature. However, dementia research presents several challenges to this perspective, particularly because of the fear associated with developing dementia. The authors argue that considerations of respect for persons, beneficence, and justice fail to justify an obligation to make aggregate research results available to participants in dementia research. Nevertheless, there are positive reasons in favor of making aggregate research results available; when the decision is made to do so, it is critical that a clear strategy for communicating results is developed, including what support will be provided to participants receiving aggregate research results.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1017/S0963180122000408 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Using visual storytelling to share aggregate findings with families participating in clinical genomics research.
Genet Med Open
April 2024
UCSF Bioethics, University of California, San Francisco, CA.
Purpose: Sharing aggregate results with research participants is a widely agreed-upon ethical obligation; yet, there is little research on communicating study results to diverse populations enrolled in genomics research. This article describes the cocreation of a visual narrative to explain research findings to families enrolled in a clinical genomics research study.
Methods: The design process involved researchers, clinicians, study participants, a physician illustrator, and a health communications expert.
A complete DNA repair system assembled by two endosymbionts restores heat tolerance of the insect host.
Proc Natl Acad Sci U S A
December 2024
State Key Laboratory of Integrated Management of Pest Insects and Rodents, Institute of Zoology, Chinese Academy of Sciences, Beijing 100101, China.
DNA repair systems are essential to maintain genome integrity and stability. Some obligate endosymbionts that experience long-term symbiosis with the insect hosts, however, have lost their key components for DNA repair. It is largely unexplored how the bacterial endosymbionts cope with the increased demand for mismatch repairs under heat stresses.
View Article and Find Full Text PDFEthical considerations for sharing aggregate results from pragmatic clinical trials.
Clin Trials
November 2024
Department of Bioethics, NIH Clinical Center, Bethesda, MD, USA.
A growing literature has explored the ethical obligations and current practices related to sharing aggregate results with research participants. However, no prior work has examined these issues in the context of pragmatic clinical trials. Several characteristics of pragmatic clinical trials may complicate both the ethics and the logistics of sharing aggregate results.
View Article and Find Full Text PDFEffective military mental health considerations in Navy basic training.
Mil Psychol
November 2024
Fleet Medicine, Recruit Evaluation Unit, CAPT James A. Lovell Federal Health Care Center, North Chicago, IL.
The U.S. military has been met with challenges in manning to meet mission requirements over the past several years.
View Article and Find Full Text PDFBackground: Breast cancer is the most prevalent cancer worldwide. Belgium shows high age-standardized incidence rates, but also high survival rates. Like many health outcomes, breast cancer has been associated with multiple factors of socioeconomic status.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!