BMC Medical Ethics 22 (1):1-14 (2021)

Abstract
Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
ISBN(s)
DOI 10.1186/s12910-021-00598-3
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 63,339
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

To the Barricades!Henry T. Greely - 2010 - American Journal of Bioethics 10 (9):1-2.

Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles

Elderly Patients Also Have Rights.M. D. Pérez-cárceles, M. D. Lorenzo, A. Luna & E. Osuna - 2007 - Journal of Medical Ethics 33 (12):712-716.
Elderly Patients Also Have Rights.M. D. Perez-Carceles, M. D. Lorenzo, A. Luna & E. Osuna - 2007 - Journal of Medical Ethics 33 (12):712-716.
Managed Care and Informed Consent.Ruth R. Faden - 1997 - Kennedy Institute of Ethics Journal 7 (4):377-379.
Restraint Use And Autonomy In Psychiatric Care.C. Herrera - 2007 - Journal of Ethics in Mental Health 2:1-4.
Restraint Use and Autonomy in Psychiatric Care.C. D. Herrera - 2009 - Journal of Ethics in Mental Health 1 (1):4.

Analytics

Added to PP index
2021-03-25

Total views
5 ( #1,171,417 of 2,448,758 )

Recent downloads (6 months)
2 ( #301,105 of 2,448,758 )

How can I increase my downloads?

Downloads

My notes