Eugenics or ‘reprogenetics’? Call it what you will, but let’s do it

As The
Times recently
reports:

“British couples are to be offered a groundbreaking genetic test that
would virtually eliminate their chances of having a baby with one of more than
100 inherited diseases. The simple saliva test, which identifies whether
prospective parents carry genetic mutations that could cause life-threatening
disorders such as cystic fibrosis, spinal muscular atrophy or sickle-cell
anaemia in their children, is to be launched within weeks in Britain… If the
procedure, which will cost about £400 per person or £700 for a couple, is
widely adopted, it could dramatically reduce the incidence of 109 serious
inherited conditions that collectively affect one in every 280 births.”

Surely we should be delighted at such great news?
Surprisingly, not everyone agrees. Some experts object that the test, devised
by the Californian company
Councyl, could lead to “back door eugenics”.
They also argue that the
diseases it detects are too rare for most people to need screening, and that it
will cause needless alarm. Finally, they fear that it will raise demand for
embryo screening and abortion.

The
abortion issue is one I don’t have the space to deal with here; suffice it to
say that as long as the anticipated additional abortions were performed within
the time frame set by current British abortion law, I don’t think they would
raise a serious ethical issue. As for the idea that a test which many couples
could afford is unnecessary because only a few people are affected by the
diseases that the test is meant to detect, it is downright shocking. The
diseases in question, such as cystic fibrosis, are seriously disabling, and
often lead to early death. Even if the test could spare but one person the
burden of going through such an illness, it would still be worth it. But of
course the test – if reliable – can do much more good than that: with a
population of more than 60 million, the UK can be estimated to have more than
200’000 people suffering from one of the 109 diseases to which the test is
relevant.

To come
now to the worry about “back door eugenics”, it is unfortunate that the term
“eugenics” has become a dirty word due to its association with some of the
darkest pages of Western history in the past two centuries, and particularly
Nazi Germany. The eugenics charge only appears to carry weight because it
implicitly understands the term as referring to the horrendous ways in which
eugenics have been practiced in the past, i.e. to the compulsory sterilization
of thousands of people considered “unfit” in America and Nazi Germany. But this
shows that the charge relies on equivocation. Indeed, the genetic test that we
are discussing doesn’t involve sterilizing anyone. Its aim is to avoid that
children be born with one of a number of handicapping and dangerous diseases.
This clearly isn’t Nazi eugenics. If it is eugenics, then it is so in another
sense, i.e. it allows us to diminish the likelihood that children will be born
with certain features we judge undesirable; and we judge them undesirable
because they are likely to be seriously harmful to their well-being. If the
word is used in this sense, the claim that using the test in our reproductive
decisions would be eugenics does not constitute an objection at all. One might
as well argue that the state should not coerce its citizens in any manner, even
when they murder each other or refuse to pay their taxes, because coercive
policies have been used by the Third Reich and other totalitarian regimes, and
they were heinous.

Frances
Flinter, a genetic testing expert worried about the test’s “eugenic flavour”,
is quoted as saying: “It is important to remember that some people carrying
genetic diseases would not want testing… People who are affected by some of
these genetic diseases would find a phrase and approach that suggests they aim
to eradicate them as very offensive and I can understand why.” I personally
find it more difficult to understand this, as the test is meant to help
eradicate diseases, not the people who currently suffer from them. And surely
no one in their sound mind would argue that we need to make sure some future
people will suffer from cystic fibrosis or sickle cell disease, because this
will contribute to human diversity, or for some other absurd reason. (Should we
regret the eradication of the smallpox?) If such a test can allow us to
diminish the incidence of such terrible diseases in the future, we have a
compelling moral reason to use it. The policy of London-based fertility
clinic Bridge, however, should be preferred to that of Councyl: while the former plans to
offer the test in conjunction with genetic counseling, the latter wants to sell
it directly via the internet, for home use without medical advice. As much as
possible, parents should make such reproductive decisions in an informed
manner. Also – and this is what I am most worried about – the reliability of such tests should be subjected to strict monitoring from public bodies, which is currently not the case.

If the
term “eugenics” has become so closely associated with Nazism and other
obnoxious movements that it cannot be used without a negative connotation, then
let us not use it in relation to genetic tests of the kind just discussed. We
might prefer to talk for instance about “reprogenetics” (a term coined by Lee
M. Silver). But by all means let us not prevent ourselves from avoiding a vast
amount of suffering among future human beings just because of irrational fears
linked to a dirty word.