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.
Genetic Testing for Breast Cancer Risk. Practice evaluating how well a particular genetic test assesses breast cancer risk and the potential impact of testing on patient outcomes.
Cancer Pretest Decisions and Counseling. Practice deciding when and if genetic testing is appropriate given a patient's clinical and personal context.
Interpreting Cancer Genetic Testing Results. Practice interpreting genetic testing results within a patient's specific context.
Reenergizing exhausted T cells, with help from a rare immune cell known as a basophil, can kickstart the immune system into...
Christine Beck and Peter Audano are at the forefront of research involving long-read sequence data. They are particularly...
A look into Beth Dumont's work with JAX, tracing her time from summer student to an associate professor on the JAX faculty.
Charles Lee co-leads the Human Genome Structural Variation Consortium and is uncovering structural variations in the human...
JAX researchers have developed a potential new treatment for dilated cardiomyopathy (DCM), a sometimes fatal heart condition that affects...
Paige Ramkissoon reflects on how her time in the JAX Postbac program has prepared her for the next step in her academic...
With $13 million in renewed support, Karolina Palucka will further study how aging affects airway epithelial cells’...
Earlier this year, The Jackson Laboratory’s NCI-designated Basic Research Cancer Center and the American Cancer Society (ACS) teamed up to...
Researchers at The Jackson Laboratory have developed a new combination of imaging and computational methods to study connections between...
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