A5077100860- Ethics in Clinical Research
- Genomics and Rare Diseases
- Patient-Provider Communication in Healthcare
- Patient Dignity and Privacy
- Biomedical Ethics and Regulation
Universidade do Porto
2022
Background Data-intensive and needs-driven research can deliver substantial health benefits. However, concerns with privacy loss, undisclosed surveillance, discrimination are on the rise due to mounting data breaches. This undermine trustworthiness of processing institutions reduce people's willingness share their data. Involving public in governance help address this problem by imbuing frameworks societal values. study assesses views about involvement individual-level decisions concerned...
Assessing public and patients' expectations concerns about genomic data sharing is essential to promote adequate governance engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 disease patients, 478 informal carers 63 healthcare professionals Northern Portugal benefits risks for research, its associated factors. The three participant groups expressed significantly different views. majority patients (84.3%) (87.4%) selected discovery a cure...