Redesigning Informed Consent Tools for Specific Research

Wright, David

doi:10.1080/10572252.2012.641432

Cited by 14 publications

(12 citation statements)

References 30 publications

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“…84 Dr. Wenger, head of a venereal disease clinic, said that the only way to get the men for autopsy was to put them in a government hospital to instill more confidence. 85 Because there were very limited policies for consent 78 procedures or for oversight committees in this study, IRBs became more popular and influential after this. 86 Jonsen notes that this case was the most significant for the public's view of ethics.…”

Section: Late 1900s To Early 2000mentioning

confidence: 98%

“…84 Often consent forms can be vague with inadequate information or with confusing information. 85 Breaking up large amounts of information into more manageable segments over a period of time can encourage appropriate communication. 86 If less information is presented at a time, then people might understand that information better before moving on to other information about risks.…”

Section: ) Process Approachmentioning

confidence: 99%

“…Having the BRCA mutation is significantly lower than a 50 % chance. 85 Also Klitzman suggests that education, emotions, concepts of responsibility, penalties, and social aspects will play a role. First, the level of education can have a positive or negative effect.…”

mentioning

confidence: 98%

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Informed Consent in Predictive Genetic Testing

Minor¹

2015

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Section: Late 1900s To Early 2000mentioning

confidence: 98%

Section: ) Process Approachmentioning

confidence: 99%

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Informed Consent in Predictive Genetic Testing

Minor¹

2015

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Section: ) Process Approachmentioning

confidence: 99%

Revised Model of Informed Consent

Minor

2015

Informed Consent in Predictive Genetic Testing

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The fourth chapter explains the revised model by aligning the three distinguishing characteristics of PGT with the three widely recognized components in the current model. The practice of the current model of informed consent in matters related to genetics tends to be more of an event, disclosure model.1 Tom Beauchamp explains that some technologies make it more difficult to encourage growth of both technological and patient rights.2 The new genetic technologies being developed and implemented today have many implications for informed consent that are not being adequately addressed in the current model.According to Ulrike Felt, Milena Bister, Michael Strassnig, and Ursula Wagner, if actual practices are different than what the ideal goals are, then some changes need to occur. As a result, the authors question if revising disclosure methods are the only necessary changes.3 While one of the foundations of consent is disclosing information, the revised model seeks to go further. The revised model focuses on a process approach that promotes understanding over time with assessment mechanisms. The process of consent encourages respect for persons by supporting selfdetermination for decisions. 4 To explain the significance of the revised model of consent, the following main categories of comprehension, disclosure, voluntariness, and patient safety are discussed. The first three categories will analyze both the current and revised model of informed consent for PGT, and the last category will discuss patient safety in the revised model.

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“…Research that has explored and developed technology-based presentation of information for consent purposes is, again, very rare, tends to be clinically oriented (cancer research) and with a focus on adult respondents (Wright, 2012;Kim, Young, Neimeyer, Baker, & Barfield, 2008). One of the few examples of research that has sought children and young people's views directly about how research information should be provided, and informed consent from children and young people sought more effectively, also comes from the context of clinical research (Spencer, Boddy, & Rees, 2014).…”

Section: Informed Consent With Children and Young People In Social Rementioning

confidence: 99%

The Potential of Digital Technologies for Transforming Informed Consent Practices with Children and Young People in Social Research

Parsons

2015

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How children and young people understand and exercise their autonomy, engagement and decision-making is fundamental to learning how to become active and engaged citizens, and to be socially included. Digital technologies are increasingly an integral part of children's everyday lives and, therefore, valuable tools for supporting social inclusion. This paper discusses how digital technologies might positively support autonomy, engagement and decision-making through the lens of informed consent practices within social research. Current research practices are dominated by paper-based methods for obtaining informed consent which could be exclusionary for children and young people generally, and children with additional learning and support needs in particular. Digital technologies (laptops, PCs, tablet devices, smartphones) offer the potential to support accessibility and understanding of ideas and activities, as well as engagement with and autonomy in decision-making and participation. This paper explores this potential as well as the challenges that researchers may face in this context.

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Redesigning Informed Consent Tools for Specific Research

Cited by 14 publications

References 30 publications

Informed Consent in Predictive Genetic Testing

Informed Consent in Predictive Genetic Testing

Revised Model of Informed Consent

The Potential of Digital Technologies for Transforming Informed Consent Practices with Children and Young People in Social Research

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