Positive and Negative Aspects of Genetic Testing
There are many potential benefits which can arise as a result of genetic testing. Individuals identified as carrying potentially harmful genetic alterations can receive regular medical check-ups and be eligible for screening to enable early detection of cancer (although these options are also available to individuals who have not been tested but who do have a strong family history of cancer); they may also choose to undergo preventative surgery. This can potentially lead to a reduction in cancer incidence and mortality.
Individuals who are found not to carry a harmful gene alteration which is known to run in their family may feel that they are less anxious and have a better quality of life; they may also benefit from the knowledge that they have not passed a gene alteration on to their children. Also, because such individuals do not require the same regular checkups as do people who carry the gene, resources can be targeted to benefit those people who do have a higher risk of developing cancer.
Despite the significant advantages of genetic testing, there are also, however, several disadvantages which any individual considering undergoing testing should be aware of (these include the limitations of the genetic testing technique which were discussed in the previous section.)
Because genetic alterations generally need to be identified in a family member who has already developed cancer this can lead to distress and difficult family relations, for example if there are no surviving family members who are able to undergo diagnostic genetic testing, or if an individual is reluctant to undergo testing he/she may be subject to pressure from other family members. A positive genetic test can also lead to an increased level of anxiety and individuals may feel guilty for having potentially passed a gene alteration on to their children. There may also be issues for individuals wishing to obtain health and life insurance.
Receiving a negative genetic test can also affect family relations, with many individuals feeling ‘survivor guilt’, for example if they have a brother or sister who has been shown to carry that gene alteration, they may feel guilty at having escaped the increased cancer risk, while their sibling is still at risk.
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 alteration will lead to increased levels of anxiety throughout their life. They choose, instead, to undergo regular medical check-ups, and screening, to enable early detection of cancer without ever having to know their genetic status.
It is very important that genetic testing is always accompanied by pre- and post-test counselling so that individuals are able to make an informed choice about whether or not to undergo testing, and have access to extra support if needed. Below we have provided a few links to UK-based websites which can provide further information on the issues discussed in the Genetics and Cancer and Genetic Testing sections:
- Cancerbackup (www.cancerbackup.org.uk) is Europe's leading cancer information charity, and has over 4,500 pages of up-to-date cancer information. They have a comprehensive section on genetics and cancer, and provide advice for individuals who are worried about cancers running in families.
- In the UK there is currently a voluntary ban which prevents companies who are members of the Association of British Insurers from being able to access the results of genetic tests (apart from those for Huntington’s disease) . This ban is due to be reviewed in 2014. For more information please refer to the Association of British Insurers’ (ABI) leaflet ‘Insurance and Genetic Tests: What you need to know’ which can be accessed through the ABI's website.
Next Section >> About IMPACT