When Is My Genetic Information Your Business? Biological, Emotional, and Financial Claims to Knowledge

Abstract

Deciding to undergo a predictive genetic test is difficult. The patient has no symptoms that might tip the balance in favor of the test, and knowledge of the information might have significant implications for her physical and mental health, her family, and her financial position. Furthermore, although the decision to undergo many medical tests might reasonably be said to be the patient's own business, it could be argued that predictive genetic tests are different. Dean Bell and Belinda Bennett argue that genetic information has a “shared” or “familial” character due to the likelihood of it affecting others. If others might be affected by the results of your test, then it is certainly plausible to suggest that they have an interest in knowing the information. If that is the case, then it could also be argued that they are entitled to be considered when you are deciding whether to undergo a test.