Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRC...

Volledige beschrijving

Bibliografische gegevens
Hoofdauteurs:	Ormondroyd, E, Moynihan, C, Watson, M, Foster, C, Davolls, S, Ardern-Jones, A, Eeles, R
Formaat:	Journal article
Taal:	English
Gepubliceerd in:	2007

Gelijkaardige items

Communicating genetics research results to families: problems arising when the patient participant is deceased.
door: Ormondroyd, E, et al.
Gepubliceerd in: (2008)

Is no news good news? Inconclusive genetic test results in <it>BRCA1 </it>and <it>BRCA2 </it>from patients and professionals' perspectives
door: Ardern-Jones Audrey, et al.
Gepubliceerd in: (2010-01-01)

Disclosure of individual genetic data to research participants: the debate reconsidered.
door: Bredenoord, A, et al.
Gepubliceerd in: (2011)

Developments in Clinical Practice: Follow up Clinic for BRCA Mutation Carriers: a Case Study Highlighting the "Virtual Clinic"
door: Ardern-Jones Audrey, et al.
Gepubliceerd in: (2004-02-01)

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study
door: Erisa Sabakaki Mwaka, et al.
Gepubliceerd in: (2021-01-01)

Disclosure of clinically actionable genetic variants to thoracic aortic dissection biobank participants
door: Adelyn Beil, et al.
Gepubliceerd in: (2021-03-01)

Strategic disclosure of intermediate research results
door: Gill, D
Gepubliceerd in: (2004)

Strategic Disclosure of Intermediate Research Results.
door: Gill, D
Gepubliceerd in: (2004)

Strategic Disclosure of Intermediate Research Results.
door: Gill, D
Gepubliceerd in: (2004)

BRCA genetic result disclosure for women with Breast Cancer: influence of +/- predisposition genetic mutation
door: Jessica Ranieri, et al.
Gepubliceerd in: (2023-08-01)

Adult Death Disclosure to a Surviving Spouse
door: Paul DeSandre, et al.
Gepubliceerd in: (2015-09-01)

Child Death Disclosure – Standardized Patient Case
door: Jeffrey Siegelman, et al.
Gepubliceerd in: (2015-03-01)

Pre-symptomatic genetic testing for inherited cardiac conditions: A qualitative exploration of psychosocial and ethical implications
door: Ormondroyd, E, et al.
Gepubliceerd in: (2014)

Pre-symptomatic genetic testing for inherited cardiac conditions: a qualitative exploration of psychosocial and ethical implications.
door: Ormondroyd, E, et al.
Gepubliceerd in: (2014)

Views of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study
door: Mackley, M, et al.
Gepubliceerd in: (2018)

Mandatory disclosure of pharmaceutical industry-funded events for health professionals.
door: Jane Robertson, et al.
Gepubliceerd in: (2009-11-01)

Training surgeons and the informed consent discussion in paediatric patients: a qualitative study examining trainee participation disclosure
door: Samuel Grant, et al.
Gepubliceerd in: (2019-08-01)

Amnestic MCI patients’ experiences after disclosure of their amyloid PET result in a research context
door: Gwendolien Vanderschaeghe, et al.
Gepubliceerd in: (2017-12-01)

Feedback of individual genetic results to research participants: is it feasible in Europe?
door: Budin-Ljøsne, I, et al.
Gepubliceerd in: (2016)

Development of a Communication Protocol for Telephone Disclosure of Genetic Test Results for Cancer Predisposition
door: Patrick-Miller, Linda J, et al.
Gepubliceerd in: (2014-10-01)

Problem-focussed interactive telephone therapy for cancer patients: a phase II feasibility trial.
door: Watson, M, et al.
Gepubliceerd in: (2013)

Problem-focussed interactive telephone therapy for cancer patients: A phase II feasibility trial
door: Watson, M, et al.
Gepubliceerd in: (2013)

Investigating the criminology of disclosure of genetic data
door: Seyed Mohammad Amin hosseini, et al.
Gepubliceerd in: (2020-09-01)

Disclosure in the Digital Age: investigating the impact of transparency on political participation
door: Amin, R
Gepubliceerd in: (2017)

Understanding participation in sport and physical activity among children and adults: a review of qualitative studies
door: Allender, S, et al.
Gepubliceerd in: (2006)

Understanding participation in sport and physical activity among children and adults: a review of qualitative studies.
door: Allender, S, et al.
Gepubliceerd in: (2006)

Education, early life, and political participation: New evidence from a sibling model
door: Barry C. Burden, et al.
Gepubliceerd in: (2020-09-01)

Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers
door: J. Scott Roberts, et al.
Gepubliceerd in: (2021-01-01)

Research participants’ experiences with return of genetic research results and preferences for web‐based alternatives
door: Jill B. Gaieski, et al.
Gepubliceerd in: (2019-09-01)

Pregnancy decisions after fetal or perinatal death: systematic review of qualitative research
door: Ruth Bell, et al.
Gepubliceerd in: (2019-12-01)

P471: Uptake of a chatbot for disclosure of germline genetic test results through a universal genetic testing program*
door: Elyssa Zukin, et al.
Gepubliceerd in: (2024-01-01)

P187: Consent frequency for genetic participation and receiving genetic results in White and non-White participants in SPARK
door: Alexandra Goler, et al.
Gepubliceerd in: (2024-01-01)

Avoiding methodological bias in studies of amyloid imaging results disclosure
door: Carl Taswell, et al.
Gepubliceerd in: (2019-06-01)

Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up.
door: Foster, C, et al.
Gepubliceerd in: (2007)

Donation after cardiocirculatory death: a call for a moratorium pending full public disclosure and fully informed consent
door: Joffe Ari R, et al.
Gepubliceerd in: (2011-12-01)

The Qualitative Research Interview: Participants' Responsive Participation in Knowledge Making
door: Mirjam Knapik
Gepubliceerd in: (2006-09-01)

A qualitative study on women’s breast cancer diagnosis disclosure preferences and disclosure experiences in a middle-income country
door: Frema Osei-Tutu, et al.
Gepubliceerd in: (2023-01-01)

The association between sexual behavior and disclosure of HIV test results in Central Kenya
door: C. Kingori, et al.
Gepubliceerd in: (2015-03-01)

Disclosure of Spousal Death to Patients with Dementia: Attitude and Actual Behavior of Care Managers
door: Hisashi Kato, et al.
Gepubliceerd in: (2023-02-01)

Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort.
door: Watson, M, et al.
Gepubliceerd in: (2004)