One theme raised in our STV 202 class is that acquisition of information may precede practical knowledge of what to do with that information. This issue is especially noticeable in health, where it has become very easy to track people's vital statistics but not so easy to know how to use the results to benefit them.
Think of any commercial fitness tracker you can name.
The same is true of genomic testing, as illustrated by a recent article in Nature by Erica Check Hayden. Her article describes how a commercial genetic test revealed that 14-year-old carried a genetic mutation linked to dilated cardiomyopathy, a condition that can result in sudden death among adults.
However, neither the girl nor her mother, who carries the same mutation, have displayed any symptoms. In fact, it seems that many people who have potentially lethal genetic mutations live symptom free:
In August, researchers reported that the average person carries about 54 genetic mutations that are considered lethal, but that don’t seem to harm their health. As a result, physicians don’t know what to tell healthy people who harbour these variants.
This situation surely presents a quandary for doctors who are increasingly confronted with such results from patients who have taken commercial genetics tests.
However, another aspect of the situation is insurance. Once a test has revealed such a condition, it may be used by insurers to refuse life or disability coverage. In the US, "Obamacare" requires insurers to offer coverage to people with pre-existing conditions. Yet, Donald Trump has promised to repeal this law.
Should people who are asymptomatic but carry potentially lethal mutations be refused insurance?
This case serves as a reminder that, although gathering ever more information may seem harmless, it may raise issues that are problematic for the individuals involved and their society more generally.