THERE can be no doubt that sequencing the human genome will transform
medicine, but will everyone benefit? The downside of the health care revolution
could be a widening gap between rich and poor—and perhaps even the
creation of a genetic underclass. “We shouldn’t forget about social
inequalities, about redressing the balance between rich and poor,” says
Hastie.
Few people in the developing world can hope to gain from advances such as
screening for susceptibility to diseases. And even in rich countries, some
people will benefit to a much greater extent than others. One reason is that
it’s not just individuals and their doctors who’ll want to know the results of
such screening—insurance companies will also be keen to know what your
genes hold in store for you.
In countries with a national health system, this will mainly affect your
chances of getting life insurance. In Britain, for example, a professional code
forbids insurers from requesting that clients take genetic tests as a
precondition for providing cover. However, they can—and often
do—seek access to existing test results. This isn’t permitted in countries
such as the Netherlands, but a recent survey there suggested that companies were
flouting the law
(91av, 15 April, p 17).
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In countries where insurance companies pay for health care, the fears are
more acute. In the US, a federal law bans discrimination between people who
subscribe to group insurance plans on the basis of genetic tests. But this
covers only 80 per cent of the population, most of whom join group plans as a
perk of their employment.
For the remaining 20 per cent, including the self-employed, only a mishmash
of inconsistent and often inadequate state laws stands between them and the
harsh reality of health insurance economics.
On 12 April, the preliminary recommendations of the Secretary’s Advisory
Committee on Genetic Testing, a group set up by the US secretary of health in
1998, reiterated the need for federal law to prevent discrimination in
employment and health insurance, and to protect the privacy of genetic
information in medical records: “Without these protections, the public will be
reluctant to undergo genetic tests that might be beneficial to its health and
ɱ-Բ.”
But in the long term, the doom-mongers may be wrong. Francis Collins,
director of the National Human Genome Research Institute at the National
Institutes of Health near Washington DC, cites two powerful arguments against
using genetic testing to decide whom to employ or insure.
“There’s the justice argument: can it really be fair to decide whom to employ
on the basis of what they may die of at a later date? And there’s the
workability argument.” This says that because there’ll be so many expensive
tests generating vast amounts of extra work for insurers, it would be simpler
and cheaper to assume that everyone has a risk of some genetic defect and the
right to the same insurance premium as everybody else.
“We’re all walking around with 30 or 40 glitches in our DNA,” Collins points
out. “Calculating the risk posed by all of them is going to be so hopelessly
complex it will be unworkable.”
A source at the Association of British Insurers, who preferred not to be
named, agrees: “Ultimately, insurers are businesses. They won’t want to do loads
of testing if it’s going to end up costing them more money.”
But the implications of screening go far beyond insurance. We already screen
some embryos for single-gene disorders such as cystic fibrosis. Understanding
our genes better might allow parents to have “designer babies”, choosing the
traits they desire. Lee Silver, a biologist at Princeton University, has even
gone so far as to suggest that tinkering with our genes could ultimately lead to
humans diverging into two species.
Hastie, however, thinks it unlikely we’ll use the new techniques to assess
the genetic potential of embryos. Being told that your unborn child has a 70 per
cent risk of getting diabetes by the age of 50 isn’t that helpful. “People don’t
take terminations lightly,” he says.
And we will probably find that characteristics such as intelligence or
leadership are the results of many interacting genes. “The idea that a
particular gene `causes’ any common behavioural phenotype seems quite unlikely,”
says Steven Hyman, director of the National Institute of Mental Health near
Washington DC.
“It is very unlikely that designer babies will happen in the foreseeable
future,” says Hastie. “But never say never. Who knows what will happen in a
hundred or a thousand years’ time?”
