Response to Editorial Change and Stallworthy Letter

From The BMJ's Letters: Reproductive liberty and deafness, Clause 14(4)(9) of embryo bill should be amended or deleted
22nd May 2009

Full Text:

Our response is twofold. We first address an editorial change that we
believe has altered the meaning of our original letter. The remainder of
this letter is a response to Mr. Stallworthy’s letter.

In reference to our original letter, please note that we would avoid
the use of the term “normal” to describe the majority hearing population
precisely because it has shades of a value judgement made by hearing
people towards deaf people. Deaf people with the full range of
perspectives towards their deafness are the people best placed to choose
their own descriptors. The use of ‘normal’ glosses over this point; we
raise this here having noticed that, during editing of our previous letter
after submission, our term “hearing” was changed for “normal” without the
nuances of the substitution being obvious to the editors.'

Mr. Stallworthy’s letter supports Clause 14 (4) (9) of the proposed
Human Fertilisation and Embryology Bill, arguing that outlawing genetic
selection for deafness would result in less suffering in the world. We
have two main concerns with the views set forth in his letter: that our
views are misrepresented and that his reasoning is flawed. 

Firstly, he has the same misunderstanding as many amongst the popular
press and politicians who think the representatives of the Deaf community
in the UK are campaigning for rights to select deaf embryos. This is not
the case: for example, see the StopEugenics campaign www.stopeugenics.org.
There is no campaign or movement that seeks to harness genetic technology
to create deaf babies; what alarms us is the specific targeting of embryos
with the genes for deafness as an example of 'serious abnormality'. Our
position with regards to the clause asks that reproductive choices be the
same for both deaf and hearing people. This presents two options: either
it will be illegal to use pre-implantation genetic diagnosis to select for
or against deafness or everyone will have equal legal access to this
technology (the current status quo). In the latter case, reproductive
decisions are private and made by individuals through consultation with
health professionals. 

Secondly, Mr. Stallworthy errs in deriving general conclusions from
his own particular experience. Two authors of the original letter are deaf
and can empathize with Mr. Stallworthy's experiences; however, we reject
the assumption he makes that being born deaf necessarily consigns one to
second-class citizenship. We believe that most barriers to citizenship are
socially constructed and therefore surmountable, including the example he
gives of supplying visual train announcements as well as audible ones. We
do not condone or excuse discrimination towards deaf people, but do not
accept that preventing the existence of those who are discriminated
against is the solution. 

Mr. Stallworthy supports the reduction of deaf births as an aim in
itself. As a measure of the ‘success’ of genetic counselling, a reduction
in birth incidence of particular conditions was discarded years ago by
genetic counselling professionals (1, 2, 3). It was seen as an
unacceptable focus on the individual who would have the condition rather
than on the society into which they would be born. Genetic counselling
professionals shifted the focus onto aiming to provide non-directive
information to support the autonomy of parents. This public health
argument for purposefully seeking to prevent the number of deaf babies
being born is therefore not acceptable in current practice.

We recognize that arguing for reproductive liberty requires logical
consistency. In the case of non-syndromic deafness, which is not life-
threatening and does not result in physical pain and suffering, the moral
justification for selection is murky. This is undoubtedly also the case
for other physical traits that are considered to be less socially
desirable in the mainstream, such as short stature. Mr. Stallworthy cites
the small number of people requesting this technology in order to select
for deafness as evidence that the majority of deaf people do not wish to
have deaf children. In fact, Middleton et al’s paper (4) shows that more
than half of Deaf parents and almost 40% of hearing and hard of hearing
parents replied to the question ‘Would you prefer to have deaf or hearing
children?’ with the response that they did not have a preference. We
suggest that reasons for this answer may have more to do with a person’s
position regarding appropriate uses of biotechnology than whether deaf
people have better or worse lives than hearing people.

This discussion highlights society’s value judgement of the worth of
deaf citizens and their quality of life. Mr. Stallworthy implies that,
although society is willing to tolerate and accommodate people who are
born deaf, a better solution to avoiding individual 'suffering' might be
if such births could simply be prevented from occurring. We believe that
the difficulties of determining what sorts of people should live or exist
is ethically problematic. In light of all current circumstances and with
due regard to all current social and scientific factors, we suggest that
preferences along these lines should not be codified into law. 

The case of deafness illustrates how difficult it is to draw any
lines regarding who ought to exist. Human communities form through
commonality; the reality of Deaf communities worldwide is further evidence
of this. The study of signed languages has provided opportunities for
linguists to learn more about the development of language and the mind.
More importantly, the existence of the wide diversity of human expression
and solidarity has intrinsic value - to suggest that a group of human
beings or a sociolinguistic community has less worth and ought not to
exist is to diminish us all.

1. Clarke A. Genetics, ethics and audit. Lancet 1990 May 12;
335(8698): 1145-7.

2. Chadwick RF. What counts as success in genetic counselling? J Med
Ethics 1993 Mar; 19(1): 43-6.

3. Clarke A. Response to: What counts as success in genetic counselling? J
Med Ethics 1993 Mar; 19(1): 47-9.

4. Middleton, A. et al. Prenatal diagnosis for inherited deafness – what
is the potential demand? Journal of Genetic Counseling 2001; 10(2): 121-
131.

Competing interests:
None declared

Competing interests: No competing interests

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Citation:

Blankmeyer Burke T, Emery S, Belk R, Middleton A, Turner G (2008) Response to Editorial Change and Stallworthy Letter. The BMJ, [Online]. Published 22 May 2008. [Accessed: 1 April 2020]