Cargando…

Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research

OBJECTIVES: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder. DESIGN: Semi-structured interviews and analysis/description of main themes. PARTICIPAN...

Descripción completa

Detalles Bibliográficos
Autores principales:	Ponder, M, Statham, H, Hallowell, N, Moon, J A, Richards, M, Raymond, F L
Formato:	Texto
Lenguaje:	English
Publicado:	BMJ Publishing Group 2008
Materias:	Research Ethics
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2771893/ https://www.ncbi.nlm.nih.gov/pubmed/18757643 http://dx.doi.org/10.1136/jme.2006.018564

Ejemplares similares

Approaches to consent in public health research in secondary schools
por: Bonell, Chris, et al.
Publicado: (2023)

Informed consent and research
por: Mandal, Jharna, et al.
Publicado: (2014)

Reconsidering ‘minimal risk’ to expand the repertoire of trials with waiver of informed consent for research
por: Monach, Paul A, et al.
Publicado: (2021)

Informed consent in psychiatry clinical research: A conceptual review of issues, challenges, and recommendations
por: Gupta, Umesh Chandra, et al.
Publicado: (2012)

2052: Empirical assessment of a theatrical performance on attitudes and behavior intentions toward research: The informed consent play
por: Rothwell, Erin, et al.
Publicado: (2018)

Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
por: Munung, Nchangwi Syntia, et al.
Publicado: (2016)

Readability and understandability of clinical research patient information leaflets and consent forms in Ireland and the UK: a retrospective quantitative analysis
por: O'Sullivan, Lydia, et al.
Publicado: (2020)

Four reasons why too many informed consents to clinical research are invalid: a critical analysis of current practices
por: Wisgalla, Anne, et al.
Publicado: (2022)

Deferred consent in emergency obstetric research: findings from qualitative interviews with women and recruiters in the ACROBAT pilot trial for severe postpartum haemorrhage
por: Sweeney, Lorna, et al.
Publicado: (2022)

Digitised audio questionnaire for assessment of informed consent comprehension in a low-literacy African research population: development and psychometric evaluation
por: Afolabi, Muhammed O, et al.
Publicado: (2014)

Informed Consent in Aesthetic Surgery
por: Kapoor, Lalit
Publicado: (2015)

Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study
por: Parker, Melissa J, et al.
Publicado: (2016)

An audit of consent refusals in clinical research at a tertiary care center in India
por: Thaker, SJ, et al.
Publicado: (2015)

Self-directed multimedia process for delivering participant informed consent
por: Chapman, Niamh, et al.
Publicado: (2020)

2030: “Understandable to the subject”: Plain language IRB informed consents
por: Moore, Tina, et al.
Publicado: (2018)

Informed consent in cluster randomised trials: a guide for the perplexed
por: Nix, Hayden P, et al.
Publicado: (2021)

An instrument for assessing the quality of informed consent documents for elective procedures: development and testing
por: Spatz, Erica S, et al.
Publicado: (2020)

Insisting on prospective consent in paediatric critical care research may be throwing the baby out with the bathwater
por: Doyle, Rebecca, et al.
Publicado: (2022)

2084: Knowledge, attitudes, and experiences towards genetic research among persons of African descent
por: Otado, Jane, et al.
Publicado: (2018)

Details of risk–benefit communication in informed consent documents for phase I/II trials
por: Kahrass, Hannes, et al.
Publicado: (2020)

Advance consent for participation in randomised controlled trials for emergency conditions: a scoping review
por: Niznick, Naomi, et al.
Publicado: (2023)

Insurance in clinical research
por: Ghooi, Ravindra B., et al.
Publicado: (2014)

Advanced consent for participation in acute care randomised control trials: protocol for a scoping review
por: Niznick, Naomi, et al.
Publicado: (2020)

What potential research participants want to know about research: a systematic review
por: Kirkby, Helen Michelle, et al.
Publicado: (2012)

Perspectives of Patients, Caregivers and Researchers on Research Priorities in Donation and Transplantation in Canada: A Pilot Workshop
por: Allard, Julie, et al.
Publicado: (2017)

Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
por: Kleiderman, Erika, et al.
Publicado: (2014)

An adapted instrument to assess informed consent comprehension among youth and parents in rural western Kenya: a validation study
por: Afolabi, Muhammed Olanrewaju, et al.
Publicado: (2018)

Improving surgical informed consent in obstetric and gynaecologic surgeries in a teaching hospital in Ethiopia: A before and after study
por: Teshome, Million, et al.
Publicado: (2019)

Consenting futures: professional views on social, clinical and ethical aspects of information feedback to embryo donors in human embryonic stem cell research
por: Ehrich, Kathryn, et al.
Publicado: (2010)

Consent processes in cluster-randomised trials in residential facilities for older adults: a systematic review of reporting practices and proposed guidelines
por: DiazOrdaz, Karla, et al.
Publicado: (2013)

Developing informed consent materials for non-English-speaking participants: An analysis of four professional firm translations from English to Spanish
por: Brelsford, Kathleen Marie, et al.
Publicado: (2018)

Improved parental understanding by an enhanced informed consent form: a randomized controlled study nested in a paediatric drug trial
por: Koonrungsesomboon, Nut, et al.
Publicado: (2019)

Acceptability of donor funding for clinical trials in the UK: a qualitative empirical ethics study using focus groups to elicit the views of research patient public involvement group members, research ethics committee chairs and clinical researchers
por: Shearman, Kirstie, et al.
Publicado: (2022)

Enhancing fieldworkers’ performance management support in health research: an exploratory study on the views of field managers and fieldworkers from major research centres in Africa
por: Kombe, Francis Kazungu, et al.
Publicado: (2019)

Determining the level of data sharing, and number of publications, from research databases that have been given a favourable opinion by UK research ethics committees
por: Trace, Samantha, et al.
Publicado: (2020)

‘Adding another spinning plate to an already busy life’. Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting
por: Leese, Jenny, et al.
Publicado: (2018)

2530: Should all clinical research subjects pay the same?
por: McKinney, Bernadette
Publicado: (2018)

2171: Satisfaction and perceptions of research participants in Clinical and Translational Studies
por: Otado, Jane A., et al.
Publicado: (2018)

Ethical frameworks in clinical research processes during COVID-19: a scoping review
por: Kasherman, Lawrence, et al.
Publicado: (2021)

Published patterns of spin in biomedical literature: a protocol for a meta-research study
por: Su, Naichuan, et al.
Publicado: (2021)

Cannot write session to /tmp/vufind_sessions/sess_b2m6pquear68hi2kv23bmfjn1s