Using genomics to track global antimicrobial resistance

RS Hendriksen, V Bortolaia, H Tate, GH Tyson… - Frontiers in public …, 2019‏ - frontiersin.org
The recent advancements in rapid and affordable DNA sequencing technologies have
revolutionized diagnostic microbiology and microbial surveillance. The availability of …

Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

S Kalkman, J Van Delden, A Banerjee, B Tyl… - Journal of medical …, 2022‏ - jme.bmj.com
Introduction International sharing of health data opens the door to the study of the so-called
'Big Data', which holds great promise for improving patient-centred care. Failure of recent …

Clinical trial participants' views of the risks and benefits of data sharing

MM Mello, V Lieou, SN Goodman - New England journal of …, 2018‏ - Mass Medical Soc
Background Sharing of participant-level clinical trial data has potential benefits, but
concerns about potential harms to research participants have led some pharmaceutical …

Public attitudes toward consent and data sharing in biobank research: a large multi-site experimental survey in the US

SC Sanderson, KB Brothers, ND Mercaldo… - The American Journal of …, 2017‏ - cell.com
Individuals participating in biobanks and other large research projects are increasingly
asked to provide broad consent for open-ended research use and widespread sharing of …

[HTML][HTML] Mainstreaming genetics and genomics: a systematic review of the barriers and facilitators for nurses and physicians in secondary and tertiary care

S White, C Jacobs, J Phillips - Genetics in Medicine, 2020‏ - Elsevier
Purpose Genetic and genomic health information increasingly informs routine clinical care
and treatment. This systematic review aimed to identify the barriers and facilitators to …

[HTML][HTML] Public attitudes toward biobanking of human biological material for research purposes: a literature review

J Domaradzki, J Pawlikowski - International journal of environmental …, 2019‏ - mdpi.com
Background: During the past few decades there has been a growing interest on the part of
many governments in the creation of biobanks. Nevertheless, this would be impossible …

Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia

R Milne, KI Morley, H Howard, E Niemiec, D Nicol… - Human genetics, 2019‏ - Springer
Trust may be important in sha** public attitudes to genetics and intentions to participate in
genomics research and big data initiatives. As such, we examined trust in data sharing …

[HTML][HTML] Public preferences for digital health data sharing: discrete choice experiment study in 12 European countries

R Biasiotto, J Viberg Johansson, MB Alemu… - Journal of medical …, 2023‏ - jmir.org
Background With new technologies, health data can be collected in a variety of different
clinical, research, and public health contexts, and then can be used for a range of new …

Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey

C Brall, C Berlin, M Zwahlen, KE Ormond, M Egger… - PloS one, 2021‏ - journals.plos.org
This paper reports survey findings on the Swiss public's willingness, attitudes, and concerns
regarding personalized health research participation by providing health information and …

Systematic review of participants' attitudes towards data sharing: a thematic synthesis

N Howe, E Giles, D Newbury-Birch… - Journal of health …, 2018‏ - journals.sagepub.com
Objectives Data sharing is well established in biological research, but evidence on sharing
of clinical trial or public health research study data remains limited, in particular studies of …