Ethics in genetic testing
The below text is by no means a comprehensive review of the ethical considerations surrounding genetic testing. It is intended as a starting point to show readers the ethical problems ad questions related to genetic testing. This area is very active both in the scientific as well as in the public literature with many questions and problems still remaining to be solved.
While genetic knowledge is expanding rapidly with new discoveries made on a daily basis, scientists are producing new genetic test with increased reliability and accuracy for predicting development of specific diseases. However, very few people anticipated the amount of ethical issues that will arise from development of such test. It was first believed that genetic tests will we welcomed by public as means to determine in advance who will develop or not develop certain diseases. But it turned that for instance individuals where a family history of genetic diseases is present don't want to know if they inherited the mutations. They prefer to live with the hope that they will not develop the disease rather than having knowledge that they will.
Ethical questions also arise to people that only carry a certain mutation. What should a couple do if the woman is a carrier of let's say cystic fibrosis or Huntington's. Should she even have children? If she does and the child is determined to have the mutation should the child be aborted or carried to term? Such knowledge, especially if received without proper genetic consulting, can have devastating effects on the individuals as well as their couples and family members.
Another important issue is also related to the privacy, confidentiality and security of such data. Many people refuse genetic tests not just because they are afraid of losing their health but also because their jobs and insurances could be lost. Is it ethical for an insurance company to pay for a test only if they receive the results? What if they later, based on the results, decide not to extend or sell policies or even raise the insurance to people with certain mutations? This fear of discrimination by insurance companies and also employers if often justified and represent a great deal of concern in the current world.
Genetic testing and psychological consequences
Results of genetic tests that predict the development of certain diseases can have unexpected consequences that people usually do not think of. They can influence decisions about career choices, education, family or even marriage. Often such tests not only provide information about the individual that is being tested but also their family members discussed below. In any way the individual or the family member need to come to term with the results of the test. Some people are relieved when the results arrive other may feel distressed which can in turn influence the way they feel about themselves and also their relationships with relatives or loved ones.
Impact on family relationships
Genetic tests may affect family relationships since the information obtained not only relates to the tested individual, but may also provide information about the risk of close relatives. Genetic consulting by the managing clinician is therefore advisable before a genetic test is performed. Genetic counseling ma also be essential at the time when the test results is provided, to explain the implication and consequences of the findings in relation to the available treatment options for tested individuals as well as his/her at-risk family members.