By Kevin E. Noonan —
Newsweek has always been Avis to Time Magazine's
Hertz — evidenced by an increasing difference in subscriptions (3.3 million versus
1.97 million on 2009). So it isn't
surprising that the magazine needs to do something to tweak its readership, even
if that something is to distort its reporting on an important issue. Which is, of course, what Newsweek has
done on its science news page in the February 15th issue, in an
article cleverly entitled "Who Owns Your DNA?"
The article, by "Science Editor" Susan
Begley (at left), is of course not a science story but a legal one. This is something Ms.
Begley expressly acknowledges ("I defer to others on the legal merits here"). But that, of course, doesn't stop her
from repeating many of the most egregious falsehoods in the debate, starting
with the first sentence:
Ever since the first human gene was
patented in 1982, there's been a near-universal "What??!!"
when people hear that it's legal for someone to own the rights to our DNA.
Of course, no one owns anyone's DNA (something even
the most vociferous participants in the debate acknowledge except, of course,
the ACLU who use the lie emblazoned on buttons to inflame the passions of their
constituents). And Ms.
Begley is careful to acknowledge the source of the lie, the late author Michael
Crichton who (in)famously expressed these views on the Op-Ed page of the New
York Times at the same time he was selling a book about the evils of gene
patenting (perhaps Ms. Begley was concerned about infringing Mr. Crichton's
copyright).
But she is not done, however, next reporting that
the "scientific issues . . . have become serious enough in the past few
years to call into question whether gene patents, meant to promote research,
instead impede it, with no offsetting benefits." Ms. Begley, unlike the rest of the news industry, seems not
to have lost the "Search" button on her computer — she acknowledges
that "[t]housands of
BRCA papers have been published, and in surveys few scientists say patents are
an obstacle to research." But
she has an answer for that: "But
few isn't none." And who
are those none that she quotes? None
other than the plaintiffs in the ACLU suit. Now, since Ms. Begley isn't a lawyer she can't be held to
legal standards, but even a reporter should realize that the plaintiffs are not
particularly reliable for refuting the overwhelming evidence that scientific
research has not been impeded, such as the hundreds of
researchers who have published thousands of research papers on the BRCA1 and
BRCA2 genes since the patents at issue in the ACLU suit were granted.
Being
facially even-handed, Ms. Begley quotes Rick Marsh, Myriad's general counsel
that "Myriad 'has never told someone they cannot do [noncommercial] research
on BRCA,'" and that "'[t]he notion that Myriad has hindered research
is incorrect.'" But rather
than exploring whether two of the plaintiffs, Arupa Ganguly and Haig Kazazian,
may have been performing research directed towards commercial applications
(thus explaining why they, and they alone, have received a "cease and
desist" letter from Myriad, and what may make them different from those
hundreds of other BRCA1 and BRCA2 researchers), she reports that Dr. Ganguly
was "scared off" from doing research by the letter and that Dr.
Kazazian thinks gene patents "inhibit biomedical research." That's their position and they're
sticking to it, of course, but while understandable in a brief, only a writer
with an unstated bias would report these sentiments uncritically.
The same
could be said for a quote from another plaintiff, Dr. Wendy Chung of Columbia University,
who alleges that there has been no testing to study the "normal variation"
of mutations in the population. That
would come as quite a surprise to the research group (Haffty et al.) at the Department of Radiation
Oncology at the Cancer Institute of New Jersey, whose paper "Breast cancer
in young women (YBC): prevalence of BRCA1/2 mutations and risk of secondary
malignancies across diverse racial groups" reported (in the October 2009
issue of the Annals of Oncology):
BACKGROUND: Despite significant
differences in age of onset and incidence of breast cancer between Caucasian
(CA), African-American (AA) and Korean (KO) women, little is known about
differences in BRCA1/2 mutations in these populations. The purpose of this
study is to evaluate the prevalence of BRCA1/2 mutations and the association
between BRCA1/2 mutation status and secondary malignancies among young women
with breast cancer in these three racially diverse groups. METHODS: Patients
presenting to our breast cancer follow-up clinics selected solely on having a
known breast cancer diagnosis at a young age (YBC defined as age <45 years
at diagnosis) were invited to participate in this study. A total of 333
eligible women, 166 CA, 66 AA and 101 KO underwent complete sequencing of
BRCA1/2 genes. Family history (FH) was classified as negative, moderate or
strong. BRCA1/2 status was classified as wild type (WT), variant of uncertain
significance (VUS) or deleterious (DEL). RESULTS: DEL across these three
racially diverse populations of YBC were nearly identical: CA 17%, AA 14% and
KO 14%. The type of DEL differed with AA having more frequent mutations in
BRCA2, compared with CA and KO. VUS were predominantly in BRCA2 and AA had
markedly higher frequency of VUS (38%) compared with CA (10%) and KO (12%). At
10-year follow-up from the time of initial diagnosis of breast cancer, the risk
of secondary malignancies was similar among WT (14%) and VUS (16%), but
markedly higher among DEL (39%). CONCLUSIONS: In these YBC, the frequency of
DEL in BRCA1/2 is remarkably similar among the racially diverse groups at
14%-17%. VUS is more common in AA, but aligns closely with WT in risk of second
cancers, age of onset and FH.
Perhaps
someone should explain the inhibitory
effects on breast cancer research occasioned by the Myriad patents to these
researchers. Ms.
Begley's bias is revealed at the end of the article:
The justification for patents is that
they encourage innovation: make a discovery, reap the financial rewards. But I
have real doubts that this applies in genetics. Discoveries, not dollars, are
what motivate most geneticists. (I have criticized that before: because
scientists care so little about turning basic discoveries into useful
treatments, they have dropped the ball when it comes to helping patients.) If
being first, not being rich, is what drives gene researchers, it is hard to see
why society should tolerate patents on human genes that act as even the
slightest brake on discovery.
Ms. Begley should realize that she, and society,
can't have it both ways — either we want treatments and diagnostic testing for
diseases or we don't. These
treatments and tests are developed by companies, not universities, and
companies require investment, if only to maximize the likelihood that the
treatments will work and the diagnoses will be reliable. While discoveries would still occur in
the absence of patents, commercialization would not, and Ms. Begley should consider
those realities if she thinks scientists have "dropped the ball" when
it comes to helping patients. She says her goal is for basic research to help patients; if so, Ms.
Begley should think long and hard about whether that aim is consistent with
stories like hers directed instead to selling more copies of Newsweek.
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