This initiative promises“to accelerate the development and application of new
technologies [that]will open new doorsto explore how the brain records, processes,
uses, stores, and retrieves vast quantities of information,and shed lighton the
complex links between brain function and behavior”(www.whitehouse.gov/brain,
emphasis added). In other words, there is an expectation that this $300 million
initiative will shine a new light into the black box of the human mind.
The mapping of genes, methylation, and brain activity will answer many
questions about the black box of human biology, but these technologies will not be
able to provide direct information about lived experience. How can we make sense
of the body we inhabit every day—the lived complexity of genetics, physiology,
neurology, behaviors, and feelings?
How Perception Corresponds with Objective Measurement
As Ron Amudsen writes in Chap. 14 (this volume), all biomarkers mark facts about
us and, sometimes, the measured phenomena become part of who we are. For
example, more than a million people have sought their genetic ancestry from
23andMe, AncestryDNA, and other genetic testing services. For these people, the
gap between the biomarked condition (the pattern of SNPs indicating ancestry) and
the subjective judgment about the condition can disappear, and the lived experience
can embrace the biomarker:“I am 50% African.”“I am 4% Neanderthal.”Consider a
cholesterol level of 240. The units of measurement and biological details may be
irrelevant to the affected person, but conventional wisdom holds that 240 is a high
number and that number can become part of a person’s identity:“I have high
cholesterol.”A woman with a BRCA allele that predisposes her to breast cancer, but
who has not had the disease, is known as a cancer“previvor.”Previvor Angelina Jolie
wrote a widely cited op-ed piece for theNew York Timesto share her experience with
the double mastectomy she elected to have because she carries the BRCA1 gene. Her
doctors estimated that she had an 87% risk of breast cancer. Her true risk of breast
cancer before mastectomy can never be known, but Jolie now estimates her chances
of developing breast cancer to be under 5% (Jolie 2013 ). We strive to make visible
the invisible, and then, the measure becomes part of who we are.
Sometimes, the gap between the measured condition and the subjective judge-
ment about the condition or experience is much wider. This raises the question of
which output from the black box—objective or subjective—should be the gold
standard for comparison. For example, one could argue that if a woman does not
feel a menopausal hotflash, then the measured, physiological experience is not
clinically important. However, the measured, physiological experience is most
often used as the gold standard (Fisher and Thurston, Chap. 11 , this volume; Sievert
2013 ).
A similar challenge has been raised in the assessment of hearing. People who
used digital hearing aids indicated subjective improvements in their ability to
understand speech in a background of noise. However, empirical research did not
316 L.L. Sievert and D.E. Brown