In the last blog post, we responded to the call of Nature
(the journal, that is) in “Genetics without Borders.” In this, we examine the
second of three editorials in this week’s issue concerning regulation of DNA
testing companies: “Putting DNA to the Test.”
It should be pointed out at the beginning that the wrath of
the editors descends in unequal fury on commercial enterprises. They are not as
irate at ancestry companies as “personal genomics providers.” They seem to have
in mind mostly concerns like 23andme, which promises for $399.00 to sequence
your personal genome and give you “access to all health, disease, and trait
reports” maintained by its staff, together with “ all ancestry features and raw
data download.” To the editors of Nature, this is akin to practicing medicine
and genetic counseling on the Internet. Spit into a cup, discover your personal
DNA sequences and get an email when a medical article mentions your
nucleotide position.
The presumptuous and condescending attitude of the editors
is evident in their first paragraph (italics added): “The availability of affordable,
direct-to-consumer genetic tests has mushroomed,
leaving regulation lagging behind. Dozens of companies now offer inexpensive (elsewhere:
cheap) home kits that allow people to spit into tubes, send the samples for DNA analysis and receive a report
that allegedly details their ancestry
or their possible susceptibility to a long list of disorders that have been
linked — often tenuously — to
particular genes. But the value of these tests remains debatable, which is why (bad
predication in our grammar book) the industry
needs a strong set of quality standards and codes of conduct to protect both its consumers and its own credibility.”
Aside from poor writing (which seems to be a requirement for
an advanced degree in the natural sciences), there are numerous examples of
logical fallacies in this and the rest of the article. Perhaps Wittgenstein was
right. What cannot be put into words cannot be thought. What can only be poorly
expressed is poorly thought.
It is unclear whether the regulators would extend the same
benevolent protection to the academic researchers who also consume genomics laboratory services. A case can be
made that even their understanding is not always perfect and up-to-date. Elsewhere in the same issue of Nature are
warnings to fellow scientists who make exaggerated claims about their research. The editors also reprove wayward brethren who seek to dip more than once in the immortalizing
waters of the Pierian springs, by submitting their work to multiple journals,
often under different guises or false pretenses.
The world of science has so much dirty underwear of its own,
it is surprising it wishes to examine that of others. Credibility seems to be
in short supply everywhere.
Without dissecting what is a mess of snips to start with,
let us draw attention to one scenario the would-be regulators raise.
“Customers,” they predict, “will frequently receive results telling them only
that they face the ambiguous possibility of a somewhat elevated risk of a
little-understood disorder.... If the ambiguous, slightly elevated risk relates
to a frightening condition such as breast cancer, some individuals might feel
compelled to undertake drastic and perhaps needless measures, such as
prophylactic mastectomy [surgical removal of a breast to avoid cancer].”
I read this horrific statement to a friend of mine over
the phone, who said she had been in that exact situation. Doctors found a lump
in her breast. Knowing that ancestry testing had placed her in a category of
predisposition to developing breast cancer, she underwent, after due deliberation, “prophylactic
mastectomy." “I was thankful I took the DNA test,” she
said, “because it gave me information that helped me evaluate my risks.” She
says she is sure that if she had not taken the step she did, she would have
breast cancer today.
It is arrogant of scientists to think they must protect
people from information. This is the stance of a totalitarian state that
controls and censures the information consumed by the populace, or of a state
religion such as that which ruled supreme during the Middle Ages. It was attempted
with disastrous results in so-called “activist era” of the Federal Trade
Commission during the 1960’s and 1970’s under Commissioner Mary Gardiner Jones.
An institutional ideology of this sort assumes that consumers require
protection from scientific information that they may misinterpret and that may
lead to personal or social distress. For example, misplaced information like
this might lead historically disadvantaged communities to increase their
distrust of the scientific establishment . . . . as though the scientific
establishment didn’t do enough in that direction!
Another of the editors’ arguments against releasing genetic
information to the populace is that genetic information is always evolving and
may not be complete. Quoadusque? we may ask with Cicero. When will it be complete? Or complete
enough? And who is to make that judgement?
Instead of mad, speculative and needless worry about consumers who are
supposedly ignorant and defenseless, why don’t we let reason and the unimpeded flow
of information take their course? Those two forces educated, up to a point, the scientists who
are now trying to second guess the public. While it may have taught them a lot
of facts, it did little apparently to sharpen their powers of philosophical
reflection.
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