Resources about ethical, legal, and social issues (ELSI) related to genetics and genomics in clinical practice
Accessing and using genetic information clinically can raise unique ethical, legal, and social concerns, generally known as ELSI. For example, unlike most other types of medical information, identifying a genetic variant in a patient may also diagnose his or her close relatives with the condition without them ever agreeing to testing. Recognizing what these issues may be in a specific situation provides the opportunity to discuss them directly with patients and identify ways to address them. The resources below discuss ELSI issues, their clinical implications, and ways to discuss them with patients.
GINA Discussion Guide. Provides talking points and key information about genetic discrimination and the Genetic Information Nondiscrimination Act (GINA), which protects individuals from the misuse of genetic information in health insurance and employment.
Communicating with Family Factsheet. Provides tips for the provider to assist in family communication about genetic testing and risk.
Informed Consent Checklist. Outlines key points to include in pretest counseling that help prepare an individual for the potential outcomes of genetic testing.
Core Competencies for Healthcare Providers. Identifies competencies in genetics for all healthcare providers, developed by the National Coalition for Health Professional Education in Genetics (NCHPEG).
Free, self-directed programs for continuing education credit. Courses contain case studies and/or information that discuss ELSI implications in clinical practice.
Practice evaluating how well a particular genetic test assesses breast cancer risk and the potential impact of testing on patient outcomes.
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Practice deciding when and if genetic testing is appropriate given a patient's clinical and personal context.
Access CME Module | Access CNE Module
Practice interpreting genetic testing results within a patient's specific context.
Access CME Module | Access CNE Module
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Family history resources for healthcare providers.
Core principles that should constitute basic instruction in genetics for those in health care.
GINA protects individuals from the misuse of genetic information in health insurance and employment. These case studies provide context for...
The Jackson Laboratory Cancer Center (JAXCC) is a National Cancer Institute-designated Cancer Center complemented by institutional...
First global online catalog of Patient-Derived Xenograft models helps cancer researchers save valuable time.
Resources for clinical educators teaching genetics.
Genetic testing resources for healthcare providers.
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