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.
Published work: The CADRe workgroup identified ethical concerns related to the communication of genetic testing. We then published a consensus between bioethicist, medical geneticists, and genetic counselors on a minimal set of topics that should included when consenting for genetic testing. Using a mixed method approach, we confirmed this ‘minimal consent’ framework with a larger group of medical geneticist and genetic counselors.
Future directions: Our current work is focused on evaluating whether the ‘CADRe framework’ increases access to genetic testing while supporting patient decision making.
- Defining the critical components of informed consent for genetic testing.
- Application of a framework to guide genetic testing communication across clinical indications
- Genetic Testing: Consent and Result Disclosure for Primary Care Providers.
- Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background.
- Ethical issues in genomic consent for high risk patients