Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held 'exceptionalist' views about genetics (i.e., believed DNA is different or 'special' compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7080803PMC
http://dx.doi.org/10.1038/s41431-019-0550-yDOI Listing

Publication Analysis

Top Keywords

usa canada
8
canada australia
8
genomic data
8
views genetics
8
personal experience
8
exceptionalist views
8
data
6
dna
5
personal
5
members public
4

Similar Publications

Extracorporeal membrane oxygenation and pregnancy.

Best Pract Res Clin Anaesthesiol

September 2024

Department of Anaesthesiology, University Hospitals Leuven (BE), Department of Cardiovascular Sciences, KU Leuven (BE), Herestraat 49, B-3000, Leuven, Belgium.

Critical illness during pregnancy poses significant challenges driven by complex interactions between physiological changes, pre-existing conditions, and healthcare disparities. In high-income countries, increasing maternal age and comorbidities complicate obstetric care by triggering an unprecedented rise in cardiac disease during pregnancy, while infections like influenza and COVID-19 are important causes of maternal adult respiratory distress syndrome. Extracorporeal membrane oxygenation (ECMO) gained prominence as a vital intervention, providing respiratory and/or cardiac support, for varying indications between antenatal and postpartum periods.

View Article and Find Full Text PDF

Objective: Neurocognitive (NC) impairment in people with HIV (PWH) is associated with erythrocyte indices, which may serve as indicators of iron metabolism, inflammation, and related factors. Erythropoiesis requires iron, regulated by a multifaceted system of peptide hormones, including hepcidin. This study postulated that hepcidin might modify the relationship between erythrocyte indices and NC performance in PWH.

View Article and Find Full Text PDF

The WOUND-Q is a patient-reported outcome measure for individuals with any type of chronic wound. This study aimed to identify patient and wound factors associated with the four WOUND-Q health-related quality of life (HRQL) scales: Life impact, Psychological, Sleep, and Social. Adults with a chronic wound were recruited internationally through clinical settings between August 2018 and May 2020, and through an online platform (i.

View Article and Find Full Text PDF

Patients with cancer expect prolonged life (overall survival, OS) or better life (quality of life, QOL) from cancer treatments. However, majority of new cancer drugs are now being approved not based on improved OS or QOL, but based on surrogate endpoints such as tumor shrinkage or delayed tumor progression. These surrogate endpoints, including their validity as a proxy for overall survival, differ based on disease settings and lines of treatment but in general, most surrogate measures have weak correlation with outcomes that matter to patients.

View Article and Find Full Text PDF

Background: Psilocybin therapy (PT) produces rapid and persistent antidepressant effects in major depressive disorder (MDD). However, the long-term effects of PT have never been compared with gold-standard treatments for MDD such as pharmacotherapy or psychotherapy alone or in combination.

Methods: This is a 6-month follow-up study of a phase 2, double-blind, randomised, controlled trial involving patients with moderate-to-severe MDD.

View Article and Find Full Text PDF

Want 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!