If a genetic disorder runs in my family, should I take my daughter for genetic testing?
When a genetic disorder is diagnosed in a family, family members often want to know what the likelihood is that either their children or they themselves will develop the condition. This can be difficult to predict because many factors influence a person’s chances of developing a genetic condition. The choice to have genetic counselling and to proceed with genetic testing is one to be taken seriously and with some caution. Though it can sound simple to be tested, there are many things to consider before making this decision.
Some people with a strong family history of cancer believe they would find it too difficult to receive a positive genetic test result. They may feel that knowing they are definitely a carrier of a harmful gene will lead to increased levels of anxiety throughout their life. They choose instead, to undergo regular medical check-ups and screening for the early detection of cancer without ever knowing their genetic status.
Genetic testing for breast cancer susceptibility may pose unanticipated psychological and social problems. A positive test result can leave your daughter wobbling. But these results can also be a call to action.
Many of the risks associated with genetic testing involve the emotional, social, or financial consequences of the test results.
Your daughter may feel angry, depressed, anxious, or guilty about the results.
A negative genetic test can also affect family relations, with many individuals feeling ‘survivor guilt’. For example, if a brother or sister carries that gene alteration, the unaffected sibling may feel guilty for escaping the increased cancer risk.
In some cases, genetic testing creates tension within a family unit because the results can reveal information about other family members in addition to the person who is tested. The possibility of genetic discrimination when searching for employment or insurance can also be of concern. Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes, or increases the risk of an inherited disorder.
Bear in mind that identification of a genetic mutation may thrust your daughter into an uncertain state.
Important generalisations include:
• A positive test for breast cancer susceptibility may end her hopes and dreams immediately.
• Raising concerns about intimacy, dating and relationships.
• A postive result can stir up emotions such as anxiety, depression, anger and making important decisions under conditions of uncertainty.
Genetic information is generally viewed as enabling as it allows participants to take measures to confront the disease. Cancer is – an unexpected and unwelcome disruption for everyone in the family. The emotions you experience are also unpredictable. They range from shock, guilt, anger, fear, sadness and depression. These emotions are all part of the roller coaster ride you feel on a daily basis.
Before taking your daughter through the genetic test, also take into consideration her emotional and psychological maturity.
Some patients avoid knowledge of imminent disease which makes avoidance behaviour an important area for social and psychological research, particularly with regard to genetic testing.
Written by Rebecca Musi