Refusal to Participate

Publication Title: 
New Genetics and Society

This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered.

Williams, Garrath
Schroeder, Doris
Publication Title: 
AIDS care

Latinos are under-represented in HIV/AIDS medical research in the US. Although they are disproportionately impacted by HIV/AIDS, Latinos may be reluctant to participate in HIV vaccine trials. Three focus groups were conducted with 32 Spanish-speaking Latinos recruited from two community-based healthcare organizations in Los Angeles, California. A qualitative focus group interview guide was developed to explore concerns, motivators and intentions in regard to participation in HIV vaccine trials.

Brooks, R. A.
Newman, P. A.
Duan, N.
Ortiz, D. J.
Publication Title: 
The Journal of Trauma

BACKGROUND: The objective of this study is to examine the reasoning behind donation decisions of donor-eligible patients' next-of-kin. Cases were identified through chart review at hospitals in Ohio and Pennsylvania. Family decision makers of donor-eligible patients (N = 420) were interviewed to understand decisions regarding organ donation. METHODS: Responses to inquiries regarding donation decisions were recorded verbatim and then categorized into major themes. Patterns of reasons to donate or not were examined to identify trends.

Siminoff, Laura
Mercer, Mary Beth
Graham, Gregory
Burant, Christopher
Publication Title: 
Aging Clinical and Experimental Research

BACKGROUND AND AIMS: The French institute for study of geriatric infection risk (ORIG) has run a multiphase multicenter study (VESTA) to develop and implement active programs promoting healthcare worker (HCW) influenza vaccination. The present article reports results after implementation of the first active program. METHOD: A cluster-randomized controlled trial was conducted from December 1 to December 15, 2005, and a total of 43 geriatric wards (3646 HCWs) were randomly assigned to two clusters.

Rothan-Tondeur, Monique
Filali-Zegzouti, YounËs
Belmin, JoÎl
Lejeune, Benoist
Golmard, Jean-Louis
de WaziËres, BenoÓt
Carrat, Fabrice
Piette, FranÁois
Mouala, Christian
Gavazzi, GaÎtan
ORIG association
Publication Title: 
Chronic Respiratory Disease

The aim of this article is to understand the reasons for attending a chronic obstructive pulmonary disease (COPD)-specific self-management (SM) programme and how attendance at such programmes might be improved. A total of 20 qualitative semistructured interviews were carried out with patients and with lay programme tutors involved in the Better Living with Long term Airways disease (BELLA) pilot trial. Thematic framework data analysis was used.

Sohanpal, Ratna
Seale, Clive
Taylor, Stephanie J. C.
Publication Title: 
PloS One

BACKGROUND: India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research.

Rodrigues, Rashmi J.
Antony, Jimmy
Krishnamurthy, Shubha
Shet, Anita
De Costa, Ayesha
Publication Title: 
JAMA pediatrics

IMPORTANCE: A child's health, positive perceptions of the research team and consent process, and altruistic motives play significant roles in the decision-making process for parents who consent for their child to enroll in clinical research. This study identified that nonconsenting parents were better educated, had private insurance, showed lower levels of altruism, and less understanding of study design. OBJECTIVE: To determine the factors associated with parental consent for their child's participation in a randomized, placebo-controlled trial.

Hoberman, Alejandro
Shaikh, Nader
Bhatnagar, Sonika
Haralam, Mary Ann
Kearney, Diana H.
Colborn, D. Kathleen
Kienholz, Michelle L.
Wang, Li
Bunker, Clareann H.
Keren, Ron
Carpenter, Myra A.
Greenfield, Saul P.
Pohl, Hans G.
Mathews, Ranjiv
Moxey-Mims, Marva
Chesney, Russell W.
Publication Title: 
Clinical Transplantation

BACKGROUND: The goal of this health-psychology study was to investigate the range of motives that make someone consent or refuse participation in a clinical transplant trial.

Guedj, Myriam
Ballester, Sandrine
Kamar, Nassim
Rostaing, Lionel
Donckier, Vincent
Goldman, Michel
Cambon-Thomsen, Anne
Publication Title: 

In a scholarly analysis of widely held misconceptions, Gilovich provides a classification scheme of common flaws in reasoning seen in contemporary society. He broadly categorizes these flaws as having cognitive determinants or in having motivational and social determinants. In this survey, the authors examine the various claims against routine childhood and adult vaccines as made by the more public and more organized entities of the anti-vaccine movement as well as those made apparent by surveys of parents and other groups of individuals.

Jacobson, Robert M.
Targonski, Paul V.
Poland, Gregory A.
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