Results Interpretation & Application Toolkit

Communicating genetic testing results

Communicating the results and limitations of genetic testing clearly and compassionately is important to help patients and their families adapt to results, make informed decisions and convey appropriate information to their relatives. Be aware of potential psychosocial concerns with genetic testing and results.

Prior to the communication

o o o Identify goals and information needed to provide during the conversation (come up with two versions: [1] all points you would like to cover and [2] Bare minimum they need to take away.) Determine who should be present at the time of disclosure (and if there should be a meeting post disclosure with additional people). Identify the room/setting where the meeting will occur. An exam room is usually the easiest option but often a small conference or counseling room may be more appropriate.

Phone Communication
o o o o Make sure that this is still a good time to talk, and that they are not driving or distracted. Identify if there are additional people that should be there for support (ensure that they are there before beginning). Find a quiet, uninterrupted place to make a phone call. Allow for enough time to talk and be re-contacted if spouse/other family members need to ask further questions.

In-Person Communication
o o o o Have everyone sitting (same level). Have tissues in the room prior to patients entering the room. Minimize distractions. Provide enough time.

Providing Result
o o o o Review the purpose of testing, procedures, and possible outcomes. Ask the patient/family if they are ready to hear the results. Use simple language. Discuss prognosis honestly and openly.

Assess Reactions and Respond

o o o o o o Allow a moment of silence for the patient/family to process the information and ask questions. Use open-ended questions to assess how they are absorbing the information. Give permission for emotions and normalize reactions. Use language that empowers the family to care for the child. Assess the familys support structure and provide resources and referral as appropriate . Emphasize concrete next steps and a clear plan for follow-up.

Published October 2013 NCHPEG All rights reserved