Information on sharing genetic test results should be made available to patients

The Joint Committee on Medical Genetics (JCMG) advised that healthcare professionals should discuss with a patient the possibility of sharing results before getting consent to obtain a family history or take a genetic test.

It comes after several situations where family members have developed cancers that could have been detected earlier if they had known they were at risk, the JCMG said.

Patients should be told that disclosing important genetic information, anonymously if possible, is a normal part of using a genetics service.

Although this disclosure is not compulsory, there should be a presumption to share information, where appropriate.

Information sharing should also be explained in post-clinic summary letters and in general leaflets for service users.

Where data has been shared, it should be documented in clinical notes.

The JCMG advised that family history and genetics information can be shared with other health professionals where it is necessary to deliver healthcare.

At-risk family members should be referred to their local clinical genetics unit for management.