1. SECTIONS:
2. preface & acknowledgements
3. genetics at a glance
4. contacts, support & testing
5. testing & pregnancy
6. newborn screening
7. cancer in the family
8. cardiovascular conditions
9. chromosomal conditions
10. clotting & bleeding conditions
11. cystic fibrosis
12. diabetes
13. fragile X syndrome and other causes of developmental delay
14. haemoglobinopathies
15. hereditary haemochromatosis
16. neurofibromatosis
17. neurological conditions
18. psychiatric conditions
19. genetics in practice
20. emerging genetic technologies
21. glossary

Guilt, shame and blame

1. Emotions commonly experienced after the diagnosis of a genetic condition or predisposition include guilt, shame and/or blame. These reactions are not confined only to parents or affected individuals, but can be experienced by other family members.
   
2. Guilt is a very common reaction and can take the form of questions such as
3. ‘What did I do wrong?’
   
4. ‘Is this a punishment?’
5. These questions may not always be verbalised. Instinctive rejection of a child or pregnancy affected by a genetic condition can also be a source of guilt. Guilt is a reflection of a feeling of responsibility for the condition and can be experienced by grandparents as well as parents.
   
6. Shame is an expression of the (self-) perception that an individual or couple has failed to live up to their own or society’s expectations, eg by not having a ‘normal’ baby.
7. Blame can be a defence against a potential threat to self-image, a way of stating ‘it can’t be me’. Family members may ‘blame’ the ’other side of the family’ for a problem directly or by highlighting the absence of any ‘defects’ in their family history. Blame directed at specific individuals or between a couple may be a symptom, or the start, of underlying problems in the relationship.
   
8. An intellectual understanding of genetics is not always sufficient to counteract these emotions.
   
9. Guilt can be alleviated at the time of diagnosis or once feelings of guilt have been expressed, by stating or reinforcing the fact that the individual (couple) is not responsible. Permitting the individual/couple to talk about their feelings and using skills such as normalisation may be helpful.
   
10. It is common for parents to look for a reason why their child has a condition. Taking a family and personal history may unintentionally convey that the parents contributed in some way. When taking a history, offer reassurance where possible that a factor has not contributed to the condition, eg social drinking during pregnancy has not caused a chromosomal condition.
    
11. Shame may be expressed as the desire to hide the source of shame from the eyes of a judging world. Ridicule and rejection are anticipated, so it is important that they feel the practitioner is not judgemental. Helpful skills include enabling the individual to talk about their feelings, accentuating aspects in which the individual is doing well and bolstering self-esteem. Demonstrate that an affected child or baby is not rejected by referring to them by name, and by being inclusive of the affected child, eg holding the baby, or talking to the child.

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