Cargando…

Preferences of biobank participants for receiving actionable genomic test results: results of a re-contacting study

PURPOSE: We sought to determine preferences of biobank participants whose samples were tested for clinically actionable variants but did not respond to an initial invitation to receive results. METHODS: We re-contacted a subsample of participants in the Kaiser Permanente Washington/ University of Wa...

Descripción completa

Detalles Bibliográficos
Autores principales:	Henrikson, Nora B., Scrol, Aaron, Leppig, Kathleen A., Ralston, James D., Larson, Eric B., Jarvik, Gail P.
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	2021
Materias:	Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8194390/ https://www.ncbi.nlm.nih.gov/pubmed/33603197 http://dx.doi.org/10.1038/s41436-021-01111-2

Ejemplares similares

Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening
por: Henrikson, Nora B., et al.
Publicado: (2021)

Population-based biobank participants’ preferences for receiving genetic test results
por: Yamamoto, Kayono, et al.
Publicado: (2017)

Building a family network from genetic testing
por: Leppig, Kathleen A., et al.
Publicado: (2016)

“It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
por: Henrikson, Nora B., et al.
Publicado: (2019)

Feasibility, acceptability, and limited efficacy of health system-led familial risk notification: protocol for a mixed-methods evaluation
por: Blasi, Paula R., et al.
Publicado: (2022)

Environmental scan of family chart linking for genetic cascade screening in a U.S. integrated health system
por: Haas, Cameron B., et al.
Publicado: (2022)

Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
por: Lynch, John A., et al.
Publicado: (2020)

Prospective participant selection and ranking to maximize actionable pharmacogenetic variants and discovery in the eMERGE Network
por: Crosslin, David R., et al.
Publicado: (2015)

Assessing research participant preferences for receiving study results
por: Cook, Sarah, et al.
Publicado: (2019)

ShareDNA: a smartphone app to facilitate family communication of genetic results
por: Jujjavarapu, Chethan, et al.
Publicado: (2021)

Characteristics Associated With Recruitment and Re-contact in Mayo Clinic Biobank
por: Hathcock, Matthew A., et al.
Publicado: (2020)

When Children Become Adults: Should Biobanks Re-Contact?
por: Giesbertz, Noor A. A., et al.
Publicado: (2016)

Returning Results in the Genomic Era: Initial Experiences of the eMERGE Network
por: Wiesner, Georgia L., et al.
Publicado: (2020)

Participant Preferences for the Provision of Registration Trials Results
por: Tajima, Soichiro, et al.
Publicado: (2013)

A qualitative study of participants’ views on re-consent in a longitudinal biobank
por: Dixon-Woods, Mary, et al.
Publicado: (2017)

How Geisinger made the case for an institutional duty to return genomic results to biobank participants
por: Faucett, W. Andrew, et al.
Publicado: (2016)

A comparison of genome cohort participants’ genetic knowledge and preferences to receive genetic results before and after a genetics workshop
por: Yamamoto, Kayono, et al.
Publicado: (2018)

Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey
por: Brall, Caroline, et al.
Publicado: (2022)

Return of individual research results: What do participants prefer and expect?
por: Sayeed, Sabina, et al.
Publicado: (2021)

Assessing the Preference of Rabbit Does to Social Contact or Seclusion: Results of Different Investigations
por: Dal Bosco, Alessandro, et al.
Publicado: (2020)

Neglected ethical issues in biobank management: Results from a U.S. study
por: Cadigan, R Jean, et al.
Publicado: (2013)

Characterizing biobank organizations in the U.S.: results from a national survey
por: Henderson, Gail E, et al.
Publicado: (2013)

“You're never really off time”: Healthcare providers' interpretations of optimal timing for HPV vaccination
por: Henrikson, Nora B., et al.
Publicado: (2016)

Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry
por: Laurino, Mercy Y., et al.
Publicado: (2017)

Employment Characteristics and Risk of Hospitalization Among Older Adults Participating in the Mayo Clinic Biobank
por: Takahashi, Paul Y., et al.
Publicado: (2022)

Research participants’ experiences with return of genetic research results and preferences for web‐based alternatives
por: Gaieski, Jill B., et al.
Publicado: (2019)

Ethical Considerations Related to Return of Results from Genomic Medicine Projects: The eMERGE Network (Phase III) Experience
por: Fossey, Robyn, et al.
Publicado: (2018)

Mental health in UK Biobank: development, implementation and results from an online questionnaire completed by 157 366 participants
por: Davis, Katrina A. S., et al.
Publicado: (2018)

Health research participants are not receiving research results: a collaborative solution is needed
por: Long, Christopher R., et al.
Publicado: (2017)

“The results are encouragements to make positive changes to be healthier:” qualitative evaluation of Marshallese participants' perceptions when receiving study results in a randomized control trial
por: McElfish, Pearl A., et al.
Publicado: (2020)

Mental health in UK Biobank: development, implementation and results from an online questionnaire completed by 157 366 participants – CORRIGENDUM
por: Davis, Katrina A. S., et al.
Publicado: (2018)

Mental health in UK Biobank: development, implementation and results from an online questionnaire completed by 157 366 participants – CORRIGENDUM
por: Davis, Katrina A. S., et al.
Publicado: (2018)

Mental health in UK Biobank: development, implementation and results from an online questionnaire completed by 157 366 participants — RETRACTED
por: Davis, Katrina A. S., et al.
Publicado: (2019)

Mobile phone calls, genetic susceptibility, and new-onset hypertension: results from 212 046 UK Biobank participants
por: Ye, Ziliang, et al.
Publicado: (2023)

Foveal Curvature and Its Associations in UK Biobank Participants
por: Olvera-Barrios, Abraham, et al.
Publicado: (2022)

Participants’ perspectives and preferences on clinical trial result dissemination: The TRUST Thyroid Trial experience
por: Racine, Emmy, et al.
Publicado: (2019)

Results of Re-vaccination
Publicado: (1853)

Developing model biobanking consent language: what matters to prospective participants?
por: Beskow, Laura M., et al.
Publicado: (2020)

On the Definition of Sarcopenia in the Presence of Aging and Obesity—Initial Results from UK Biobank
por: Linge, Jennifer, et al.
Publicado: (2020)

Physician preference for receiving machine learning predictive results: A cross-sectional multicentric study
por: Wichmann, Roberta Moreira, et al.
Publicado: (2022)

Cannot write session to /tmp/vufind_sessions/sess_uvmgsgt3gojfhcdsb6684osd8l