| Informed consent elements [1] |
| 1. information on the specific mutation(s) being tested, including whether the range of risk associated with the variant will impact medical care |
| 2. implications of a positive and negative result |
| 3. possibility that the test will not be informative |
| 4. options for risk estimation without genetic testing |
| 5. risk of passing a genetic variant to children |
| 6. technical accuracy of the test including where required by law, licensure of the laboratory |
| 7. fees involved in testing and counseling |
| 8. psychological implications of test results (benefits and risks) |
| 9. risks and protections against genetic discrimination by employers or insurers |
| 10. confidentiality issues, including policies related to privacy and data security |
| 11. possible use of DNA testing samples in future research |
| 12. options and limitations of medical surveillance and strategies for prevention after genetic testing |
| 13. importance of sharing genetic test results with at-risk relatives so that they may benefit from this information |
| 14. plans for follow-up after testing |
