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If you carried the gene for a fatal disease, would you want to know?
Let’s consider this tricky question in the context of Huntington’s Disease. Huntington’s is an untreatable genetic illness that affects the nervous system and causes changes to movement control, cognition and behaviour. Common symptoms include stumbling, fidgeting, difficulties concentrating and personality changes. Symptoms typically first show at 30-40 years of age and worsen over time until they lead to a premature death within 20 years of the disease’s onset. The average life expectancy of people with Huntington’s is only 60 years.
Huntington’s Disease is a terrible, life-changing illness, and high-risk populations (e.g., children of patients with Huntington’s) are typically offered a blood DNA test to check whether they are going to develop the disease in their lifetime. While an early diagnosis doesn’t affect the outcome of this incurable illness, having certainty about their condition was shown to help patients with important life choices. People with confirmation of the Huntington’s gene changed their attitudes about having children, retirement and education. For example, they decided to retire earlier and were more likely to consider alternatives to natural conception (e.g., IVF) to prevent passing on the illness to their children.
It thus appears that an early diagnosis can be extremely valuable, because it enables patients to make the most of their short life expectancy. Nevertheless, research shows that an astounding 93% of the high-risk population opt against taking the blood test and obtaining certainty. Furthermore, when asked to estimate their likelihood of carrying the Huntington’s gene, untested high-risk individuals displayed unrealistic levels of optimism and grossly underestimated their probability of developing the illness. They also carried on leading their lives as normal without adjusting life choices for the possibility of falling ill at a later point in their lives.
Information preferences
Interestingly, the phenomenon of avoiding unpleasant yet valuable information is not limited to health-related matters. Investors are less likely to check their stocks following a decline in the market, thereby avoiding unpleasant information about financial losses. Also, most people choose to remain ignorant about the exact ratings of their looks and intelligence if they suspect bad results. Finally, when given the hypothetical opportunity to learn their date of death, approximately 90% of people decide against receiving the information.
Based on people’s information preferences, psychologists broadly distinguish between so-called information seekers and avoiders. The existence of information avoiders seems puzzling at first, because choosing to ignore potentially helpful information—even if unpleasant—could be deemed irrational. So what are the reasons for avoiding bad news?
To address this question, researchers proposed a new model drawing on the concept of belief-based utility. The model states that people derive value not just from tangible outcomes such as the ability to change retirement plans based on life expectancy. Instead, beliefs or knowledge about their future may matter just as much. For some, the unpleasant and distressing knowledge about a fatal disease, for example, may cause more pain than could ever be compensated for by the opportunity to adjust consequent life choices.
What are your information preferences?
If you carried the gene for a fatal disease, would you want to know?
Returning to the initial question, what would your answer be? Are you an information seeker or avoider? Information preferences are likely to be influenced by the distress experienced when receiving bad news, and this in turn may be linked to certain personality traits. Previous research suggests, for example, that people with higher levels of extraversion and openness to new experiences may be better able to tolerate unpleasant information.
If you're interested in gaining deeper insights into your own information preferences, it can be helpful to reflect on your reactions to bad news. Do you ever avoid opening letters that are likely to contain bills? Do you find yourself delaying dentist appointments due to a fear of bad news?
Based on a similar approach, psychologists developed a scenario-based questionnaire to provide a more reliable measure of information preferences. The questionnaire contains a number of hypothetical decision situations, with participants required to indicate their desire for seeking out unfavourable information. Completing their quick online survey could help you learn about your own preferences compared to other people's.
