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possibilities. It’s harder to consider tough questions
about things like test validity, unexpected parentage
discoveries, and the role of primary care providers in
understanding results. It’s tougher still to imagine all
the new ways that access to this information might
upend our existing social systems: What are your ob-
ligations to report a genetic marker for a disease to
your health insurer? Can health insurers buy access
to this information? What access should law enforce-
ment have? What if you choose not to participate but
your information can be easily inferred from that of
a relative? And who’s responsible for considering all
of these questions and others?
Ownership and accountability are messy in the
age of modularity.
Considering all possible societal implications is a
big ask for people merely curious about their ancestry.
And consumer genetic testing falls somewhere be-
tween the Centers for Medicare and Medicaid Services
regulations of clinical research (consumer DNA test-
ing is not a clinical trial) and the Food and Drug
Administration’s regulations of drugs, biological
products, and medical devices (the FDA now lumps
consumer genetic tests in with medical devices).
Wojcicki spoke about this topic for four consecu-
tive years at Stanford’s Graduate School of Business.
Her take is that, despite its challenges, trust is still
crucial to keeping the health care system function-
ing. Therefore, if individuals couldn’t contemplate
the wide-ranging effects, and if regulators couldn’t
keep up with the breadth and pace of change,
Wojcicki had to take responsibility to deliver that
trust. Borrowing a proven concept from the existing
health industry, she engaged an independent institu-
tional review board to serve as ethical adviser on all
of 23andMe’s activities.
The fact is, 23andMe’s data can be used for
earth-changing research and, at the same time,
have unexpected destructive effects. Skipping the
middlemen of primary care providers in ordering
genetic tests — or of clinical research organizations
in collecting data — is not a question of morality
but of how we as a society maximize the benefits
while controlling costs. Pertinent applications of
23andMe’s data will be debated, probably for years,
before something like public consensus develops.
We’ve already seen that modularity enables busi-
nesses to quickly scale to entire populations, after
discovering and delivering what users want —
and that this speed shortcuts our long-standing
approaches to public scrutiny. By seeking out
third-party advisers to review the use of their data,
Wojcicki has created a countervailing power to rep-
resent the societal viewpoint, just as any traditional
research institution would maintain.
In redefining the way we access medical informa-
tion and participate in research, direct-to-consumer
genetic testing is another area where modular innova-
tions could fail us without thoughtful action. The
FDA, and certainly an individual consumer, cannot
possibly consider all the positive and negative impli-
cations of merely spitting in a cup. The companies
that find enormous value in this act must take on
some of the ethical onus, as 23andMe has set out to do.Intention to Action
Christensen et al.’s Theory of Interdependence and
Modularity is a powerful explanation of how value
chains evolve — and of the influence of consumer
demand. As value chains split apart, innovators can
reassemble them in response to customers’ desires,
in ways that take advantage of new technological
options. Executives who embrace these changes
should also seek to conscientiously address the
often less-than-obvious ethical issues that arise. We
suggest three courses of action:- Assume you become the standard bearer.
Most innovators are comfortable playing on the
margin. As disrupters who embrace modularity
come up from below, it’s easy for them to point to
traditional businesses and refer to their ability to
fulfill complex needs in the market. But success as a
disrupter should come with a sense of obligation to
change the paradigm, particularly when the upstart
turns into the dominant platform. So instead of fo-
cusing only on the outcomes of your initial attack,
work backward. Assume you become dominant.
Then ask what is most likely to break, what can be
done to prevent breaks, and how to handle them
when they occur. - Document the safeguards that would have pre-
vented such failure in the current system. Borrow a
page from lean process improvement and start by
mapping the complete value chain for the service
you’re providing as it existed before your company ar-
rived. Next, chart out the future state in which you’re