Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.
Marieke A R BakRens VeekenMarieke T BlomHanno L TanDick L WillemsPublished in: BMC medical ethics (2021)
Sudden cardiac arrest patients' donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants' data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well.
Keyphrases
- cardiac arrest
- end stage renal disease
- healthcare
- chronic kidney disease
- public health
- big data
- cardiopulmonary resuscitation
- peritoneal dialysis
- young adults
- mental health
- palliative care
- liver failure
- health information
- risk assessment
- artificial intelligence
- pain management
- hepatitis b virus
- chronic pain
- respiratory failure
- drug induced