Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research
Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on partic...
Authors: | ; ; ; ; |
---|---|
Format: | Electronic Article |
Language: | English |
Check availability: | HBZ Gateway |
Journals Online & Print: | |
Fernleihe: | Fernleihe für die Fachinformationsdienste |
Published: |
Wiley-Blackwell
[2016]
|
In: |
Bioethics
Year: 2016, Volume: 30, Issue: 3, Pages: 210-217 |
IxTheo Classification: | NCH Medical ethics |
Further subjects: | B
Policy
B Consent B Biobank B Autonomy B re-consent |
Online Access: |
Presumably Free Access Volltext (Verlag) Volltext (doi) |
MARC
LEADER | 00000caa a22000002 4500 | ||
---|---|---|---|
001 | 1727688856 | ||
003 | DE-627 | ||
005 | 20210824131513.0 | ||
007 | cr uuu---uuuuu | ||
008 | 200824s2016 xx |||||o 00| ||eng c | ||
024 | 7 | |a 10.1111/bioe.12165 |2 doi | |
035 | |a (DE-627)1727688856 | ||
035 | |a (DE-599)KXP1727688856 | ||
040 | |a DE-627 |b ger |c DE-627 |e rda | ||
041 | |a eng | ||
084 | |a 1 |2 ssgn | ||
100 | 1 | |a Wallace, Susan E. |e VerfasserIn |4 aut | |
245 | 1 | 0 | |a Respecting Autonomy Over Time |b Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research |
264 | 1 | |c [2016] | |
336 | |a Text |b txt |2 rdacontent | ||
337 | |a Computermedien |b c |2 rdamedia | ||
338 | |a Online-Ressource |b cr |2 rdacarrier | ||
520 | |a Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. | ||
601 | |a Autonomie | ||
650 | 4 | |a Autonomy | |
650 | 4 | |a Biobank | |
650 | 4 | |a Consent | |
650 | 4 | |a Policy | |
650 | 4 | |a re-consent | |
652 | |a NCH | ||
700 | 1 | |a Gourna, Elli G. |e VerfasserIn |4 aut | |
700 | 1 | |e VerfasserIn |0 (DE-588)15742152X |0 (DE-627)663849217 |0 (DE-576)346705541 |4 aut |a Laurie, G. T. |d ca. 20./21. Jh. | |
700 | 1 | |a Shoush, Osama |e VerfasserIn |4 aut | |
700 | 1 | |a Wright, Jessica |e VerfasserIn |4 aut | |
773 | 0 | 8 | |i Enthalten in |t Bioethics |d Oxford [u.a.] : Wiley-Blackwell, 1987 |g 30(2016), 3, Seite 210-217 |h Online-Ressource |w (DE-627)271596708 |w (DE-600)1480658-7 |w (DE-576)078707986 |x 1467-8519 |7 nnns |
773 | 1 | 8 | |g volume:30 |g year:2016 |g number:3 |g pages:210-217 |
856 | |u https://europepmc.org/articles/pmc4762535?pdf=render |x unpaywall |z Vermutlich kostenfreier Zugang |h repository [oa repository (via OAI-PMH doi match)] | ||
856 | 4 | 0 | |u https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12165 |x Verlag |
856 | |u https://doi.org/10.1111/bioe.12165 |x doi |3 Volltext | ||
936 | u | w | |d 30 |j 2016 |e 3 |h 210-217 |
951 | |a AR | ||
ELC | |a 1 | ||
ITA | |a 1 |t 1 | ||
LOK | |0 000 xxxxxcx a22 zn 4500 | ||
LOK | |0 001 3742367900 | ||
LOK | |0 003 DE-627 | ||
LOK | |0 004 1727688856 | ||
LOK | |0 005 20210824131513 | ||
LOK | |0 008 200824||||||||||||||||ger||||||| | ||
LOK | |0 040 |a DE-Tue135 |c DE-627 |d DE-Tue135 | ||
LOK | |0 092 |o n | ||
LOK | |0 852 |a DE-Tue135 | ||
LOK | |0 852 1 |9 00 | ||
LOK | |0 935 |a ixzs |a ixzo | ||
LOK | |0 936ln |0 1550736558 |a NCH | ||
OAS | |a 1 | ||
ORI | |a SA-MARC-ixtheoa001.raw | ||
STA | 0 | 0 | |a Biobank |
STB | 0 | 0 | |a Biobanque |
STC | 0 | 0 | |a Banco de biomaterial |
STD | 0 | 0 | |a Biobanca |
STG | 0 | 0 | |a Banco de biomaterial |
STH | 0 | 0 | |a Биобанк |
STI | 0 | 0 | |a Βιοτράπεζα |
SYE | 0 | 0 | |a Biomaterialbank |