Counselling

Genetics
Introduction
o What she understands about the condition
o Why she wants the test must not be coerced
o ICE
Clarify about the Index case diagnosis and accuracy
o Draw a family tree (parents, siblings, cousins, aunts and uncles)
o Is she married
o Is there a confidante (should not be someone who is also at risk)
Explain the condition (check what she knows and what she wants to know)
o Nature symptoms and signs
o Treatment
o Prognosis
o AR, AD, X-linked
Explain procedure of test
o Pre-test counselling, referral to regional genetic center
o Test itself: Blood test, genetic make-up
o False positive and false negative
o Post test follow up, assignment of counsellor
Implications
o Medical, worry
o Social job, marriage, children
o Financial - insurance, social security
o Careful as the test may reveal status of relative who does not want to know
o Careful as the test may reveal other information such as parent may not be the
biological parent
o May need DNA from a relative who may not want to do or know the test
Plan
o Advice to make another appt in 1 months time to think about it
o Options not taking the test, deposit for research of future use
o There is time no need to make the decision now
o Referral to regional genetic center if she wants to proceed with the test
Multidisciplinary team consisting of a neurologist, geneticist, MSW,
psychiatrist