Biocensorship for the Biocentury?
The freedom to explore one’s own biology, all the way down to the molecular level, should be among the freedoms we hold dear as individuals. I’m agitated that the censorship of personal biological data is being advocated as a reasonable course of action to reign-in the nascent consumer genomics industry. Self-examination should not require permission from any authority. We should protect the autonomy and integrity of individuals.
For most of human history, the ability of an individual to learn about their own body through self-examination was limited to little more than the five senses: sight, touch, hearing, taste, and smell. Modern technological advances have extended these natural abilities dramatically. Devices allow us now to see details about ourselves that were once low resolution, out-of-sight, or even unimaginable. Keychain widgets can dispense data on blood-alcohol levels. Joggers can monitor fluctuations in heart rate plotted against GPS-gathered data about their path, elevation, and pace. Diabetics can obtain instant glucose readings. Video games can track longitudinal BMI scores. Alarm clocks can monitor REM cycles and promise to wake their owners at a time when they are the most well-rested, the least sluggish, and still able to be on-time for the morning appointment.
The ability of individuals to obtain vast quantities of data about their own biology and environments is a new frontier. Most people are hardly aware the frontier exists at all. Only a handful of explorers have set-off into the deep data wilderness. Individuals who have access to biological data about themselves face certain risks. For example, the data might be cause for confusion or lead to actions that are regrettable. These risks are not unique to biological data. All data have the potential to be dangerous to those who choose to consume it. Restricting access to personal biological data under the premise that “data are dangerous” and people need blanket protection from misunderstandings they may encounter is tantamount to censorship.
The only reason more people are not outraged about this new species of censorship — biocensorship — is because the ability of individuals to obtain vast quantities of cheap data about personal biology and their environments is a new phenomenon. The introduction now of gatekeepers to “protect you” from your personal biological data would go largely unnoticed, at least for a few more years. Regulatory oversight of personalized medicine ain’t all bad. But, we should be careful not to hamstring the biocentury with biocensorship and be sure to protect the freedoms of individuals to examine their molecular selves.