Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents' and physicians' experiences

MC de Vries, M Houtlosser, JM Wit, DP Engberts… - BMC medical …, 2011 - Springer
Background Pediatric oncology has a strong research culture. Most pediatric oncologists are
investigators, involved in clinical care as well as research. As a result, a remarkable …

The challenges of informed consent in high-stakes, randomized oncology trials: a systematic review

JM Nathe, EF Krakow - MDM Policy & Practice, 2019 - journals.sagepub.com
Importance. Oncology trials often entail high-stakes interventions where potential for
morbidity and fatal side effects, and for life-prolongation or cure, intensify bioethical issues …

Consent and community engagement in diverse research contexts: Reviewing and developing research and practice: Participants in the community engagement and …

S Molyneux, S Bull - Journal of Empirical Research on …, 2013 - journals.sagepub.com
Consent and community engagement (CE) in health research are two aspects of a single
concern—that research is carried out in a respectful manner where social value is …

Informed consent: Old and new challenges in the context of the COVID-19 pandemic

E Rothwell, D Brassil, M Barton-Baxter… - Journal of Clinical and …, 2021 - cambridge.org
In this paper, we address how the COVID-19 pandemic has impacted informed consent for
clinical research through examining experiences within Clinical and Translation Science …

“SEN's completely different now”: critical discourse analysis of three “Codes of Practice for Special Educational Needs”(1994, 2001, 2015)

T Lehane - Educational Review, 2017 - Taylor & Francis
Regardless of the differing shades of neo-liberalism, successive governments have claimed
to champion the cause of “special educational needs and/or disability”(SEND) through …

What information and the extent of information research participants need in informed consent forms: a multi-country survey

J Karbwang, N Koonrungsesomboon, CE Torres… - BMC Medical …, 2018 - Springer
Background The use of lengthy, detailed, and complex informed consent forms (ICFs) is of
paramount concern in biomedical research as it may not truly promote the rights and …

Preparing accessible and understandable clinical research participant information leaflets and consent forms: a set of guidelines from an expert consensus …

E Coleman, L O'Sullivan, R Crowley… - Research Involvement …, 2021 - Springer
Abstract Background In line with Good Clinical Practice and the Declaration of Helsinki, it is
the investigator's responsibility to ensure that research participants are sufficiently informed …

Length and complexity of US and international HIV consent forms from federal HIV network trials

NE Kass, L Chaisson, HA Taylor, J Lohse - Journal of general internal …, 2011 - Springer
BACKGROUND Informed consent is required in most clinical research with humans. While
federal regulations state consent information should be understandable to participants …

Repeated assessments of informed consent comprehension among HIV-infected participants of a three-year clinical trial in Botswana

LH Chaisson, NE Kass, B Chengeta, U Mathebula… - PLoS …, 2011 - journals.plos.org
Background Informed consent (IC) has been an international standard for decades for the
ethical conduct of clinical trials. Yet frequently study participants have incomplete …

Nationwide comprehensive gastro-intestinal cancer cohorts: the 3P initiative.

RRJ van den Braak, LB Van Rijssen… - Acta …, 2018 - search.ebscohost.com
Background: The increasing sub-classification of cancer patients due to more detailed
molecular classification of tumors, and limitations of current trial designs, require innovative …