The oral communication principle and coming up to informed decision requirements in national screening programs
Short Communication
Birkeland
Public Health, May 2020; 182 pp 51-52
Abstract
Objective
Informed consent (IC) principles are often overlooked aspects in debates about national screening programs. This short communication examines the Danish approach to IC in decision-making about screening participation.
Study design
A descriptive approach is adopted in linking present screening practices with Danish regulation about IC and international ethical principles.
Methods
To ascertain the extent to which screening procedures come up to IC requirements, the article adopts a review approach by examining relevant Danish national legislation including ministerial orders as well as international ethical codes.
Results
The article finds that, although Danish legislation as well as international IC principles generally stipulates a decision-making process requiring oral communication, current procedures largely rely on one-way communication through written information available from leaflets, web sites, etc. Screening programs seem to have established no general formula to qualify healthcare users’ understanding of data underlying their choice whether to be screened.
Conclusion
The deviance from common IC principles may reduce healthcare quality, pose a safety problem, and challenge healthcare users’ ability to exercise autonomy.

Racial differences in patient consent policy preferences for electronic health information exchange
Carolyn L Turvey, Dawn M Klein, Kim M Nazi, Susan T Haidary, Omar Bouhaddou, Nelson Hsing, Margaret Donahue
Journal of the American Medical Informatics Association, 9 March 2020
Abstract
Objective
This study aimed to explore the association between demographic variables, such as race and gender, and patient consent policy preferences for health information exchange as well as self-report by VHA enrollees of information continuity between Veterans Health Administration (VHA) and community non-VHA heath care providers.
Materials and Methods
Data were collected between March 25, 2016 and August 22, 2016 in an online survey of 19 567 veterans. Three questions from the 2016 Commonwealth Fund International Health Policy Survey, which addressed care continuity, were included. The survey also included questions about consent policy preference regarding opt-out, opt-in, and “break the glass” consent policies.
Results
VHA enrollees had comparable proportions of unnecessary laboratory testing and conflicting information from providers when compared with the United States sample in the Commonwealth Survey. However, they endorsed medical record information being unavailable between organizations more highly. Demographic variables were associated with gaps in care continuity as well as consent policy preferences, with 56.8% of Whites preferring an opt-out policy as compared with 40.3% of Blacks, 44.9% of Hispanic Latinos, 48.3% of Asian/Pacific Islanders, and 38.3% of Native Americans (P < .001).
Discussion
Observed large differences by race and ethnicity in privacy preferences for electronic health information exchange should inform implementation of these programs to ensure cultural sensitivity. Veterans experienced care continuity comparable to a general United States sample, except for less effective exchange of health records between heath care organizations. VHA followed an opt-in consent policy at the time of this survey which may underlie this gap.

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam
Nguyen Thi Thanh Thuy, Le Nguyen Thanh Nhan, Nguyen Van Vinh Chau, Nguyen Thi Phuong Dung
BMC Medical Ethics, 2020; pp 1-12
Abstract
Background
Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam.
Methods
We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process.
Results
In our findings, we describe three interrelated themes related to the consent process: (1) words and regulation; (2) reimbursement, suspicions, and joining; and (3) responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu (Eng.: research) and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not.
Conclusion
Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust.