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Automatic
Ethics
Defining the critical components of informed consent for genetic testing.
The Clinical Genome Resource (ClinGen) Consent and Disclosure Recommendations Workgroup (CADRe) used an expert consensus process to identify the core concepts essential to consent for clinical genetic testing.
Ormond KE
,
Borensztein MJ
,
Hallquist MLG
,
Buchanan AH
,
Faucett WA
,
Peay HL
,
Smith ME
,
Tricou EP
,
Uhlmann WR
,
Wain KE
,
Coughlin CR 2nd
Cite
DOI
Ethical issues in genomic consent for high risk patients
This platform presentatoin will focus on an ethical framework for genomic sequencing in the ICU. The ICIEM conference will be a hybrid conference.
Nov 21, 2021 12:45 PM
Sydney, Australia
CADRe workgroup
The Consent and Disclosure Recommendations (CADRe) workgroup developed an ethical framework for consent and disclosure of genetic testing. The aim of this work is to improve access to genetic testing by supporting non-genetics trained healthcare providers to facilitate genetic testing.
Application of a framework to guide genetic testing communication across clinical indications
The CADRe recommendations provide guidance for clinicians in determining the depth of pre- and post-test communication, strategically aligning the anticipated needs of patients with the starting communication approach
Hallquist MLG
,
Tricou EP
,
Ormond KE
,
Savatt JM
,
Coughlin CR 2nd
,
Faucett WA
,
Hercher L
,
Levy HP
,
O'Daniel JM
,
Peay HL
,
Stosic M
,
Smith M
,
Uhlmann WR
,
Wand H
,
Wain KE
,
Buchanan AH
Cite
DOI
Development and application of an ethical framework for pediatric metabolic and bariatric surgery evaluation
We have demonstrated the application of a novel, overarching framework to conduct the ethical evaluation of youth presenting for metabolic bariatric surgery.
Moore JM
,
Glover JJ
,
Jackson BM
,
Coughlin CR 2nd
,
Kelsey MM
,
Inge TH
,
Boles RE
Cite
DOI
Developing interactions with industry in rare diseases: lessons learned and continuing challenges
We describe the UCDC experience and the bases for evaluating partnerships with such private entities. We review early industry interactions, the development of policies and procedures, and describe the establishment of an Industry Relations Committee, including guiding principles.
Berry SA
,
Coughlin CR 2nd
,
McCandless S
,
McCarter R
,
Seminara J
,
Yudkoff M
Cite
DOI
Genetic Testing: Consent and Result Disclosure for Primary Care Providers.
This article provides guidance about the recommended level of involvement of PCPs based on the test indication, test complexity, disorder management, and the potential for psychosocial sequela.
Faucett WA
,
Peay H
,
Coughlin CR 2nd
Cite
DOI
Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background.
Considering ethical, legal, and social implications, and medical factors, CADRe developed and pilot tested two rubrics addressing consent for genetic testing and results disclosure.
Ormond KE
,
Hallquist MLG
,
Buchanan AH
,
Dondanville D
,
Cho MK
,
Smith M
,
Roche M
,
Brothers KB
,
Coughlin CR 2nd
,
Hercher L
,
Hudgins L
,
Jamal S
,
Levy HP
,
Raskin M
,
Stosic M
,
Uhlmann W
,
Wain KE
,
Currey E
,
Faucett WA
Cite
DOI
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