Risk

  1. Discussing genetics can involve explaining many different types of risk, including the risk of:
  2. Receiving an 'increased risk' result from a screening test
  3. Having a baby with a chromosomal abnormality (based on maternal age or screening test results)
  4. Being a carrier for a genetic condition
  5. Having a child affected by a genetic condition
  6. Having a genetic predisposition to an adult-onset genetic condition
  7. Developing a condition to which an individual has a genetic predisposition
  8. The term ‘risk’ can imply a negative outcome and sometimes ‘chance’ or ‘probability’ may be more appropriate terms.
  9. Many people find concepts of chance or risk difficult to understand and find numbers or percentages
    confusing. Graphs, pie charts or figures showing groups of people may be useful alternatives. Some people do not realise that risk gives an idea of how likely or unlikely a situation is, not that the situation will definitely happen. Describing risk in terms of individuals can assist this.
  10. Risk figures can be misunderstood and can be seen as being ‘used up’. For example, a one in four risk of an affected pregnancy is often (wrongly) interpreted as meaning once a child is affected, the next three will not be.
  11. Conversely, an individual who has experienced an uncommon event, such as the diagnosis of pregnancy with a fetal abnormality, can feel heightened vulnerability and find it difficult to believe that the event is unlikely to happen again.
  12. The significance of a given risk varies between individuals. The same risk figure may sound unacceptable (high risk) to one individual, but acceptable (low risk) to another. For this reason, it is important to clarify the individual’s reactions to a risk assessment and explore any apparent contradictions with open-ended questions or reflection (eg ‘You seem to feel these are pretty good odds’ or ‘It seems like too much of a risk to you’).
  13. The use of ‘high’ and ‘low’ to describe risk is therefore very subjective and it may be preferable to use ‘increased’ and ‘decreased’ risk.
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Ways of explaining prenatal screening risk figures

Giving an increased risk result:

A 29-year-old woman receives an increased risk result for Down syndrome after a serum screen test. The risk is 1 in 100. Prior to the test her risk was based on maternal age alone and was 1 in 1002.

  1. Risk relative to maternal age:
    ‘Your risk is now similar to that of a 39 to 40 year old who has not had any screening. Women who have this level of risk are offered further testing to determine if the baby has Down syndrome.’
  2. Comparison to other women getting the same test result:
    ‘Of 100 women with this test result, on average, one will have a baby with Down syndrome and 99 will have babies who do not have Down syndrome.’
  3. Some people find it easier to understand numbers visually as diagrams.
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