(The opinions expressed here are those of the author, a
columnist for Reuters.)
By Reihan Salam
Dec 2 (Reuters) – In 1890, two of America’s leading legal
minds, Louis Brandeis and Samuel Warren, published an article
called “The Right to Privacy” in the Harvard Law Review.
Scandalized by the rise of a gossip-mongering press that
intruded on the lives of prominent citizens, they called upon
the courts to recognize a “right to privacy.” Their fear was
that new technological and commercial innovations – in this case
photography and the mass-circulation gossip rag – would cause
the rich and famous untold mental pain and distress. As Stewart
Baker observes in his provocative book Skating on Stilts, the
substance of Brandeis and Warren’s argument now seems rather
quaint, as a gossipy news media has become a central part of our
public life. In Baker’s telling, “the right to privacy was born
as a reactionary defense of the status quo.” And even now, he
argues, privacy campaigners often overreact against new
technologies they fear but do not understand.
Baker’s argument has been panned in civil libertarian
circles. When he suggests that societies eventually adapt to new
technologies – that “the raw spot grows callous” as we grow
accustomed to invasions of privacy – privacy campaigners reply
that it is Baker who has grown callous to the harms in question.
Baker’s central goal is to convince Americans to accept that
government must use new technological tools, like the data
mining programs used by the National Security Agency, to combat
mass-casualty terrorism. His critics maintain that he is far too
glib about the potential that government might abuse these new
tools, and indeed too dismissive of the notion that it has
already done so.
I’m torn on the question of whether the national security
state has overstepped its bounds, and there are people I respect
on both sides of the debate. Civil libertarians like Ben Wizner
of the American Civil Liberties Union and Julian Sanchez of the
Cato Institute see the new Leahy-Sensenbrenner USA FREEDOM Act-
which would end the dragnet collection of Americans’ phone
records under the PATRIOT Act, and limit other surveillance – as
an important step towards reining in a bureaucracy run amok.
Baker fears that it will cripple the ability of U.S.
intelligence officials to prevent future terror attacks. I
couldn’t tell you which side is closer to the mark.
What is increasingly clear to me, however, is that privacy
concerns are limiting our ability to flourish as a society for
reasons having nothing to do with NSA surveillance.
The Food and Drug Administration recently ordered one of
America’s most popular consumer genonics firms, 23andMe, to
cease selling and marketing its direct-to-consumer DNA test on
the grounds that it is a medical device subject to FDA approval.
The FDA’s case seems pretty flimsy. The saliva collection kit
that 23andMe offers through its Personal Genome Service is
utterly harmless, and no one is claiming otherwise. Rather, the
FDA is concerned that by giving its consumers data on disease
risks, complete with plenty of disclaimers, it may prompt them
to seek unnecessary MRIs and mastectomies, as Christina Farr of
VentureBeat reports. The obvious rejoinder to these concerns is
that consumers don’t have the option, for better or for worse,
of operating on themselves. They generally need a medical
practitioner to sign off, and medical practitioners hardly
suffer from a lack of licensing and regulation. The FDA seems to
be engaging in a senseless power grab.
The reason this matters is that 23andMe represents just the
first step of the coming consumer genomics revolution. Recently,
Razib Khan and David Mittelman outlined the future of consumer
genomics in a short article in Genome Biology. First, Khan and
Mittelman expect that startups like 23andMe, which offer
consumers basic information about their ancestry and genealogy,
to grow more popular as the costs of their DNA tests continue to
plummet. Then these vast databases will be used to yield real
scientific insights, as biomarkers record how we respond to the
food we eat and the activities we undertake, and this data “is
intersected with millions with varying levels of genetic
relatedness and lifestyle.” The result will be “a perpetual
stream of novel insightful predictions,” and Khan and Mittelman
see this future as all but inevitable. Yet for this future to
become a reality, consumers will have to grow more comfortable
with sharing their personal medical data. One of the reasons
Americans are so sensitive about sharing this data is that many
of them fear becoming uninsurable, a fear that universal
coverage will (hopefully) do much to allay. If privacy concerns
win the day, the marriage of big data and personal genomics
might never come to pass – and our best hope for achieving
medical breakthroughs in the decades to come will be dashed.
It’s not just a desire for medical privacy that’s getting in
the way of progress. U.S. higher education institutions have
fought tooth and nail against efforts to build a unified
database of “student unit records” – collected throughout a
student’s educational life, and anonymized – that can allow
taxpayers, parents, and students to see how different kinds of
students have fared at different colleges and universities. As
Kevin Carey, director of education policy at the New America
Foundation, has argued, higher education institutions understand
that if this data is released, the federal government can hold
them accountable for their performance. For example, a student
unit record system will reveal which schools do the best and
worst job of educating low-income students who receive Pell
Grants.This is a prospect that keeps higher education
administrators up at night, and with good reason, as it
threatens the flow of federal dollars to subpar educational
programs.
So how do the higher education institutions get away with
keeping Americans in the dark about how well they are educating
U.S. students? It’s simple. Critics of a federal student unit
record system warn that it represents a threat to student
privacy – determined sleuths might be able to figure out the
grades and household income levels of individual students,
despite efforts to anonymize the data. And though there are many
techniques schools and governments can use to protect privacy,
it really is true that data anonymization is a hard problem to
solve. The question is whether we should put privacy ahead of
the goal of building a more efficient and equitable higher
education system.
Privacy matters. But so do the things we give up when we let
the fear of invasions of privacy stymie the development of
promising new technologies.
(Reihan Salam)
