Intellectual optimists have seen genetic risk information as a human victory over nature. The information gives us power over our future health. What previously would have been our fate, genetics now transforms into matters of personal choice.
Reality, however, is not as rosy as in this dream of intellectual power over life. Where there is risk there is responsibility, Silke Schicktanz writes in an article on genetic risk and responsibility. This is probably how people experience genetic risk information when they face it. Genetic risk gives us new forms of responsibility, rather than liberates us from nature.
Silke Schicktanz describes how responsibility emerges in situations where genetic risk is investigated, communicated and managed. The analysis exceeds what I can reproduce in a short blog post. However, I can give the reader a sense of how genetic risk information entails a broad spectrum of responsibilities. Sometimes in the individual who receives the information. Sometimes in the professional who provides the information. Sometimes in the family affected by the information. The examples are versions of the cases discussed in the article:
Suppose you have become strangely forgetful. You do a genetic test to determine if you have a gene associated with Alzheimer’s disease. You have the gene! The test result immediately makes you responsible for yourself. What can you do to delay or alleviate the disease? What practical measures can be taken at home to help you live with the disease? You can also feel responsibility for your family. Have you transferred the gene to your children and grandchildren? Should you urge them to test themselves? What can they do to protect themselves? The professional who administered the test also becomes responsible. Should she tell you that the validity of the test is low? Maybe you should not have been burdened with such a worrying test result, when the validity so low?
Suppose you have rectum-colon cancer. The surgeon offers you to participate in a research study in which a genetic test of the tumor cells will allow individualized treatment. Here, the surgeon becomes responsible for explaining research in personalized medicine, which is not easy. There is also the responsibility of not presenting your participation in the study as an optimization of your treatment. You yourself may feel a responsibility to participate in research, as patients have done in the past. They contributed to the care you receive today. Now you can contribute to the use genetic information in future cancer care. Moreover, the surgeon may have a responsibility to counteract a possible misunderstanding of the genetic test. You can easily believe that the test says something about disease genes that you may have passed on, and that the information should be relevant to your children. However, the test concerns mutations in the cancer cells. The test provides information only about the tumor.
Suppose you have an unusual neurological disorder. A geneticist informs you that you have a gene sequence that may be the cause of the disease. Here we can easily imagine that you feel responsibility for your family and children. Your 14-year-old son has started to show symptoms, but your 16-year-old daughter is healthy. Should she do a genetic test? You discuss the matter with your ex-partner. You explain how you found the genetic information helpful: you worry less, you have started going on regular check-ups and you have taken preventive measures. Together, you decide to tell your daughter about your test results, so that she can decide for herself if she wants to test herself.
These three examples are sufficient to illustrate how genetic risk entails genetic responsibility. How wonderful it would have been if the information simply allowed us to triumph over nature, without this burdensome genetic responsibility! A pessimist could object that the responsibility becomes overpowering instead of empowering. We must surrender to the course of nature; we cannot control everything but must accept our fate.
Neither optimists nor pessimists tend to be realistic. The article by Silke Schicktanz can help us look more realistically at the responsibilities entailed by genetic risk information.
Schicktanz, S. 2018. Genetic risk and responsibility: reflections on a complex relationship. Journal of Risk Research 21(2): 236-258