scholarly journals Recruiting for Epigenetic Research: Facilitating the Informed Consent Process

2013 ◽  
Vol 2013 ◽  
pp. 1-8 ◽  
Author(s):  
Nancy Jallo ◽  
Debra E. Lyon ◽  
Patricia Anne Kinser ◽  
Debra Lynch Kelly ◽  
Victoria Menzies ◽  
...  
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Recruitment Strategy ◽  
Consent Process ◽  
Environment Interaction ◽  
Health Issues ◽  
Health States ◽  
Gene Environment ◽  
Epigenetic Research ◽  
Research Studies

Because the effects of epigenetic (gene-environment interaction) changes have been associated with numerous adverse health states, the study of epigenetic measures provides exciting research opportunities for biobehavioral scientists. However, recruitment for studies focusing on any aspect of genetics poses challenges. Multiple factors, including lack of knowledge regarding a research study, have been identified as barriers to recruitment. Strengthening the informed consent process through extended discussion has been found to be effective in recruiting for research studies in general, yet there is a paucity of information that focused on such a recruitment strategy for epigenetic studies. In this paper, we share our experiences with strategies to strengthen the informed consent process as well as provide samples of materials developed to heighten potential participants’ understanding of epigenetics, in 4 epigenetic research studies with women from diverse backgrounds experiencing a range of health issues. The combined enrollment success rate for epigenetic studies using the process was 89% with participants representing a diverse population. We posit that carefully developed recruitment scripts provided a foundation for improving potential participants’ understanding of the research project. Easy to understand illustrations of the epigenetic process provided a basis for active engagement and encouraged individual questions.

scholarly journals Awareness and Perception of Healthcare Providers about Proxy Consent in Critical Care Research

2021 ◽  
Vol 2021 ◽  
pp. 1-5
Author(s):  
Rania Mahafzah ◽  
Karem H. Alzoubi ◽  
Omar F. Khabour ◽  
Rana Abu-Farha
Keyword(s):  
Informed Consent ◽  
Healthcare Providers ◽  
Informed Consent Process ◽  
Consent Process ◽  
Proxy Consent ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Knowledge And Attitudes ◽  
Potential Benefits ◽  
Research Studies

Objective. Proxy consent respects patients’ autonomy when they are incapable of providing consent for research participation. Healthcare providers need to understand the ethical regulations and practices relevant to the proxy consent process. Thus, this study aimed to assess the knowledge and attitudes of healthcare providers about research proxy consent in the ICU setting. Methods. A cross-sectional survey-based design was used in the study. Study participants were resident and specialist physicians, registered nurses, and registered pharmacists from ICU units in Jordan. Participants were asked to fill out a questionnaire developed to assess their knowledge and attitudes towards informed proxy consent for research studies conducted at the ICU. Results. In this study, 145 healthcare providers completed the study questionnaire. The healthcare providers agreed that the purpose of the proxy consent is to inform the participants about the potential benefits (66.9%) and risks (66.9%) related to the research to study and respect patient's autonomy (44%), to discuss alternative options (62.1%), and to protect the researchers from any litigation (84.1%). Regarding the assessment of proxy consent, 65.5% of respondents believed that relatives are considered as an authorized legal representative for an informed consent decision on behalf of their ICU patients (65.5%) as they are knowledgeable about patients' values and preferences and have the desire to provide the necessary help. Respondents also agreed that the informed consent process should explain research protocols and procedures (76.6%), therapeutic alternatives (84.1%), potential benefits (41.4%), and potential risks (44.1%) and that participation in the research is voluntary (66.9%). No significant differences in the responses were found among different groups of healthcare providers. Conclusion. The majority of healthcare providers had inadequate awareness about the ethical aspects regarding the informed proxy consent process. Providing training regarding the informed consent process can improve the quality of the proxy consent process in clinical research studies in the ICU setting.

scholarly journals Undergraduate medical students. Simulation-based activity to conduct the informed consent process for health research studies

2020 ◽  
Vol 21 (2) ◽  
pp. 106-111 ◽  
Author(s):  
Gregorio Cetina-Sauri ◽  
Oswaldo Huchim-Lara ◽  
Alberto Alvarez-Baeza ◽  
Martín Inurreta-Díaz ◽  
Herbert Puga-Matu ◽  
...  
Keyword(s):  
Informed Consent ◽  
Medical Students ◽  
Health Research ◽  
Informed Consent Process ◽  
Consent Process ◽  
Undergraduate Medical Students ◽  
Simulation Based ◽  
Research Studies

Informed Consent Process Scale--Chinese Version

2019 ◽  
Author(s):  
Shu Yu Chen ◽  
Shu-Chen Susan Chang ◽  
Chiu-Chu Lin ◽  
Qingqing Lou ◽  
Robert M. Anderson
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Chinese Version ◽  
Consent Process ◽  
Process Scale

Readability of Informed Consent Forms: Analysis and Recommendations for Development of Consent Forms for Use with Communities with Limited or Low Literacy

2016 ◽  
Author(s):  
Miraida Morales ◽  
Sarah Barriage
Keyword(s):  
Informed Consent ◽  
Pilot Study ◽  
Informed Consent Process ◽  
Consent Process ◽  
Measurement Tool ◽  
Low Literacy ◽  
Consent Forms ◽  
Early Readers ◽  
Research With Children ◽  
Consentement Éclairé

This poster presents a pilot study that analyzed a small corpus of informed consent forms used in research with children, adolescents, and adult early readers using Coh-Metrix, a readability measurement tool. Recommendations for increasing readability of consent forms in order to improve the informed consent process are also provided. Cette affiche présente une étude pilote qui a analysé un corpus restreint de formulaires de consentement éclairé utilisés dans la recherche avec les enfants, les adolescents et les lecteurs précoces adultes,  utilisant Coh-Metrix, un outil de mesure de la lisibilité. Nous fournissons également des recommandations pour augmenter la lisibilité des formulaires de consentement afin d'améliorer le processus de consentement éclairé.

scholarly journals Evaluation of the Informed Consent Process of a Multicenter Tuberculosis Treatment Trial

2015 ◽  
Vol 6 (4) ◽  
pp. 31-43
Author(s):  
Kimberley N. Chapman ◽  
Eric Pevzner ◽  
Joan M. Mangan ◽  
Peter Breese ◽  
Dorcas Lamunu ◽  
...  
Keyword(s):  
Informed Consent ◽  
Informed Consent Process ◽  
Tuberculosis Treatment ◽  
Consent Process ◽  
Treatment Trial
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