[Ip-health] NYT-Op-Ed "Patenting Life" by Michael Crichton

[Suerie Moon]

New York Times
February 13, 2007
Op-Ed Contributor
Patenting Life
By MICHAEL CRICHTON

YOU, or someone you love, may die because of a gene patent that should neve=
r
have been granted in the first place. Sound far-fetched? Unfortunately, it=
=92s
only too real.

Gene patents are now used to halt research, prevent medical testing and kee=
p
vital information from you and your doctor. Gene patents slow the pace of
medical advance on deadly diseases. And they raise costs exorbitantly: a
test for breast cancer that could be done for $1,000 now costs $3,000.

Why? Because the holder of the gene patent can charge whatever he wants, an=
d
does. Couldn=92t somebody make a cheaper test? Sure, but the patent holder
blocks any competitor=92s test. He owns the gene. Nobody else can test for =
it.
In fact, you can=92t even donate your own breast cancer gene to another
scientist without permission. The gene may exist in your body, but it=92s n=
ow
private property.

This bizarre situation has come to pass because of a mistake by an
underfinanced and understaffed government agency. The United States Patent
Office misinterpreted previous Supreme Court rulings and some years ago
began =97 to the surprise of everyone, including scientists decoding the
genome =97 to issue patents on genes.

Humans share mostly the same genes. The same genes are found in other
animals as well. Our genetic makeup represents the common heritage of all
life on earth. You can=92t patent snow, eagles or gravity, and you shouldn=
=92t
be able to patent genes, either. Yet by now one-fifth of the genes in your
body are privately owned.

The results have been disastrous. Ordinarily, we imagine patents promote
innovation, but that=92s because most patents are granted for human
inventions. Genes aren=92t human inventions, they are features of the natur=
al
world. As a result these patents can be used to block innovation, and hurt
patient care.

For example, Canavan disease is an inherited disorder that affects children
starting at 3 months; they cannot crawl or walk, they suffer seizures and
eventually become paralyzed and die by adolescence. Formerly there was no
test to tell parents if they were at risk. Families enduring the heartbreak
of caring for these children engaged a researcher to identify the gene and
produce a test. Canavan families around the world donated tissue and money
to help this cause.

When the gene was identified in 1993, the families got the commitment of a
New York hospital to offer a free test to anyone who wanted it. But the
researcher=92s employer, Miami Children=92s Hospital Research Institute,
patented the gene and refused to allow any health care provider to offer th=
e
test without paying a royalty. The parents did not believe genes should be
patented and so did not put their names on the patent. Consequently, they
had no control over the outcome.

In addition, a gene=92s owner can in some instances also own the mutations =
of
that gene, and these mutations can be markers for disease. Countries that
don=92t have gene patents actually offer better gene testing than we do,
because when multiple labs are allowed to do testing, more mutations are
discovered, leading to higher-quality tests.

Apologists for gene patents argue that the issue is a tempest in a teapot,
that patent licenses are readily available at minimal cost. That=92s simply
untrue. The owner of the genome for Hepatitis C is paid millions by
researchers to study this disease. Not surprisingly, many other researchers
choose to study something less expensive.

But forget the costs: why should people or companies own a disease in the
first place? They didn=92t invent it. Yet today, more than 20 human pathoge=
ns
are privately owned, including haemophilus influenza and Hepatitis C. And
we=92ve already mentioned that tests for the BRCA genes for breast cancer c=
ost
$3,000. Oh, one more thing: if you undergo the test, the company that owns
the patent on the gene can keep your tissue and do research on it without
asking your permission. Don=92t like it? Too bad.

The plain truth is that gene patents aren=92t benign and never will be. Whe=
n
SARS was spreading across the globe, medical researchers hesitated to study
it =97 because of patent concerns. There is no clearer indication that gene
patents block innovation, inhibit research and put us all at risk.

Even your doctor can=92t get relevant information. An asthma medication onl=
y
works in certain patients. Yet its manufacturer has squelched efforts by
others to develop genetic tests that would determine on whom it will and
will not work. Such commercial considerations interfere with a great dream.
For years we=92ve been promised the coming era of personalized medicine =97
medicine suited to our particular body makeup. Gene patents destroy that
dream.

Fortunately, two congressmen want to make the full benefit of the decoded
genome available to us all. Last Friday, Xavier Becerra, a Democrat of
California, and Dave Weldon, a Republican of Florida, sponsored the Genomic
Research and Accessibility Act, to ban the practice of patenting genes foun=
d
in nature. Mr. Becerra has been careful to say the bill does not hamper
invention, but rather promotes it. He=92s right. This bill will fuel
innovation, and return our common genetic heritage to us. It deserves our
support.

Michael Crichton is the author, most recently, of the novel =93Next.=94

_____________________________
Suerie Moon
PhD Candidate and Doctoral Research Fellow
Kennedy School of Government
Harvard University
Suerie_moon@ksgphd.harvard.edu