"Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing

scientific article published on 26 April 2015

"Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing is …
instance of (P31):
scholarly articleQ13442814

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P356DOI10.1007/S10897-015-9842-8
P932PMC publication ID4621265
P698PubMed publication ID25911622

P50authorBarbara A BernhardtQ56938004
P2093author name stringDebra Skinner
Myra I Roche
Denise L Perry
Sarah R Scollon
Ashley N Tomlinson
P2860cites workInteractive e-counselling for genetics pre-test decisions: where are we now?Q38211768
The Belmont Report. Ethical principles and guidelines for the protection of human subjects of researchQ38464684
The new genetics and informed consent: differentiating choice to preserve autonomyQ39411069
A developmental approach to child assent for nontherapeutic researchQ40308733
Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-makingQ40597055
The emerging need for family-centric initiatives for obtaining consent in personal genome researchQ43107055
Points to consider for informed consent for genome/exome sequencing.Q45908845
Leading the way to genomic medicineQ48083405
What keeps you up at night? Genetics professionals' distressing experiences in patient care.Q50698218
Clinical research in low-literacy populations: using teach-back to assess comprehension of informed consent and privacy informationQ56785071
ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencingQ57642222
Diagnostic clinical genome and exome sequencingQ95515418
ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencingQ29616235
Genetics patients' perspectives on clinical genomic testingQ33771605
Return of results: ethical and legal distinctions between research and clinical careQ33835535
Teaching genomic counseling: preparing the genetic counseling workforce for the genomic eraQ33894105
Models of consent to return of incidental findings in genomic researchQ33934216
What does it mean to be genomically literate?: National Human Genome Research Institute Meeting ReportQ33970852
Quality of informed consent in cancer clinical trials: a cross-sectional surveyQ34104151
Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practiceQ34157264
Clinical whole-exome sequencing for the diagnosis of mendelian disordersQ34413680
Informed consent for whole-genome sequencing studies in the clinical setting. Proposed recommendations on essential content and processQ34549035
Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trialsQ34860257
Molecular findings among patients referred for clinical whole-exome sequencingQ35078373
Informed consent for biobanking: consensus-based guidelines for adequate comprehensionQ35108262
Altruism in clinical research: coordinators' orientation to their professional rolesQ35784327
The interface between the practice of medical genetics and human genetic research: what every genetic counselor needs to knowQ35986981
The invisible hand in clinical research: the study coordinator's critical role in human subjects protectionQ36761053
Development of a tiered and binned genetic counseling model for informed consent in the era of multiplex testing for cancer susceptibilityQ37172220
Informed consent for return of incidental findings in genomic researchQ37722733
P433issue1
P921main subjectinformed consentQ764527
P304page(s)62-72
P577publication date2015-04-26
P1433published inJournal of Genetic CounselingQ6295247
P1476title"Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing
P478volume25

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cites work (P2860)
Q90274646Challenges to informed consent for exome sequencing: A best-worst scaling experiment
Q38921250Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease.
Q34526631Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine
Q40632678Clinical and Counseling Experiences of Early Adopters of Whole Exome Sequencing.
Q55074639Clinical providers' experiences with returning results from genomic sequencing: an interview study.
Q92723252Criteria for reporting incidental findings in clinical exome sequencing - a focus group study on professional practices and perspectives in Belgian genetic centres
Q90029228Ethical conundrums in pediatric genomics
Q89449985Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study
Q54858926Experiences with obtaining informed consent for genomic sequencing.
Q95272541Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services
Q57052271Genetic Testing: Do Cancer Care Nurses Have a Role?
Q38272983Genomic Testing: a Genetic Counselor's Personal Reflection on Three Years of Consenting and Testing.
Q92348294Model consent clauses for rare disease research
Q37211225My Cancer Genome: Evaluating an Educational Model to Introduce Patients and Caregivers to Precision Medicine Information
Q97905170Parental experiences of ultrarapid genomic testing for their critically unwell infants and children
Q89455418Parents' motivations, concerns and understanding of genome sequencing: a qualitative interview study
Q52775606Pediatric Whole Exome Sequencing: an Assessment of Parents' Perceived and Actual Understanding.
Q33737044Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies
Q47278797The who, what, and why of research participants' intentions to request a broad range of secondary findings in a diagnostic genomic sequencing study