Example 1: Genetic testing provides me with a unique chance to take control of my life Facts are very important to me. They give me a sense of certainty, a sense of control over my life. Therefore, genetic testing for inheritable cancer risk was self-evident for me. If I am at risk for a disease, I really want to know, I need to know, even if there were no preventive measures available. To me, knowledge is useful as such, even if there is no way to act. I often find it difficult to understand why others in my family do not want to be tested. I think this is irresponsible, especially when they have children. I also strongly believe in scientific progress. It provides me with a lot of hope to learn about recent advances, and I am optimistic that there will be much more progress within the next ten years.
Example 2: Genetic testing is useful, but only if there is some action I could take Deciding for genetic testing for inheritable cancer risk has been easy for me. I know that cancer runs in my family, and because there are well-established preventive measures, such as screenings or surgeries, I think it is a logical consequence that I perform this test. It might also help my family members. By knowing my genetic cancer risk to be elevated, I am sure that I can prevent myself from getting sick as my mother or father did. However, I would not want to know my genetic fate if there is nothing I can do to prevent it. I do not see the benefits in that case; why should I want to know that? It would only haunt me and make me all nervous and anxious. I do not want a genetic test determining my life in such a way.
Example 3: I want genetic testing exclusively if there are immediate consequences for my health strategy Even though I think genetic testing is useful and a necessity for my health, I will wait to get tested until preventive measures are relevant for me. Doing genetic testing too early, before preventive interventions are recommended, would only worry me unnecessarily. Likewise, genetic testing for nonactionable diseases is not an option for me. If there are no direct consequences, I would rather not want to know my genetic risk. However, if I would find out I had an increased risk for cancer, preventive surgery, if applicable, would be mandatory for me.
Example 4: A genetic test has to provide me with 100% certainty I generally think knowledge is useful and helpful for me to handle life, but a genetic test for inheritable cancer risk does not provide me with enough certainty. If the genetic test reveals that I am carrying a function-affecting genetic variant, there is still a good chance that I might not get sick at all. If the test result is negative, it does not mean that I will stay healthy, either. I thus refuse to be tested. If scientific progress led to better tests in the future, I would reconsider my decision and rethink it. Until then, I have enough preventive screenings to feel safe. I do not worry too much. If it gave me 100% certainty, I would even do a genetic test for a disease without preventive measures, because then I know, and feel in better control over my life.
Example 5: I do genetic testing for my children, not for myself Genetic testing is not for me. I know we have cancer running in our family, but I’d rather not know my exact genetic risk. However, I do it for my children, because they are young and still have the chance to prevent cancer. Thus, I intuitively decided to go for genetic testing. If they wish, I would even consider doing a test for unpreventable diseases, although I find this a difficult decision.
Example 6: I do genetic testing because others convinced me that it is useful for me On my own initiative, I would not have done genetic testing for inheritable cancer risk. However, my health professionals and my relatives said that it would be useful and important for me to do it. That is mainly why I agreed to do testing. Having done testing does not bother me, I feel good with my decision. However, I would not undergo genetic testing for nonactionable diseases. I do not see the usefulness of this kind of testing; I think learning about a pathogenic genetic variant would bother me too much in that case.
Example 7: I do not want to know my genetic risk; I will leave my health-related future to fate I know cancer is running in my family, but I do not want to know my genetic risk. I prefer leaving my future life to fate, to live in the present. It is like a gamble: the risk of losing is high, and I fear I could not handle it. Genetic testing cannot provide me with any certainty, and knowing about an elevated genetic risk would only make me miserable. At the same time, learning about a negative test result would not provide me with enough relief to take that risk.