Decision making

  1. In many health settings, people expect advice and direction. In genetics, best practice is often unclear and the person may be faced with a range of options. Ultimately, the decision must be made by the person himself or herself.
  2. Choices that arise in genetics:
  3. Choosing between medical options, eg whether to have a test, and which test
  4. Deciding on prophylactic measures such as surgery
  5. Deciding whether to terminate or continue an affected pregnancy
  6. The ‘best’ decision often rests on personal factors such as values, coping style and circumstances.
  7. Individuals may perceive that family, friends, society or the medical profession are applying pressure to make a particular decision.
  8. Individuals may ask ‘What would you do?’ This question may arise from uncertainty or from a desire to check the acceptability of a decision. It is not appropriate to offer a personal opinion as this can imply that other choices are not valid or acceptable.
  9. An appropriate response to the question ‘What would you do?’ might be to acknowledge that the decision is a difficult one and to offer support in reaching a decision. Highlight that there is no right or wrong decision, and it is important that the person consider what is best for them. Decision making may be facilitated by:
  10. Using counselling skills that allow value-free and non-judgemental discussion of the issues and factors impacting on the decision
  11. Providing correct, up-to-date and unbiased information from a variety of reliable sources
  12. Allowing time and the opportunity for consultation with different sources of information
  13. Asking the individual to consider different scenarios and the impact these may have on their life
  14. Asking the individual to consider past decisions, including how they were made and what helped
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Grief and loss

  1. When given genetic information, patients may grieve the loss or change in their lives, eg they may grieve the loss of a pregnancy, grieve the anticipated loss of a child, or grieve the loss of expectations for their child or themselves.
  2. Grief is not an illness but a normal response to loss, and reflects a healthy process of adjustment over time. An understanding of the physical, emotional and social reactions of grieving people is essential. All people do not grieve in the same way. A person may benefit from some outline of the grief process to realise that their reactions (current and future) are normal. Referral for grief counselling may be appropriate (see Contacts, support and testing).
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