In their article entitled Is mitochondrial replacement
therapy eugenic and incompatible with human dignity? in BioNews 733, John
Appleby, Professor Rosamund Scott and Professor Stephen Wilkinson respond to a written
declaration by 34 parliamentarians from 13 of the 47 member states of the
Council of Europe which opposed intentional heritable modifications (1).
This declaration stated that 'the
creation of children with genetic material from more than two progenitor
persons, as is being proposed by the UK's Human Fertilisation and
Embryology Authority [HFEA], is incompatible with human dignity and international
law' (2). The parliamentarians were concerned that the UK Government may be about to
legalise maternal spindle transfer (MST) and pronuclear transfer (PT), which
are forms of germline modifications for mitochondrial DNA (mtDNA) disorders
which involve the transfer of chromosomes between unfertilised or fertilised eggs
More specifically, Appleby et al question
whether these European politicians' objections were appropriate and whether
they had correctly interpreted the provisions of the international legal
documents which they enumerate.
Appleby et al's comments are useful in
seeking to clarify the reasoning and discussions behind these texts. They begin
by mentioning Article 24 of the UNESCO's Universal Declaration on the Human Genome and Human Rights which indicates that '"germ-line
interventions" could be
considered as practices which are "contrary
to human dignity"'.
In this regard, they respond to the statement
that MST and PT may be detrimental to human dignity by stressing, instead, that
the procedures 'would substantially benefit the person (by curing or preventing
mitochondrial disease)'. Moreover, Appleby et al suggest that 'It
would be perverse if the UNESCO Declaration actually aimed to restrict
beneficial therapies because they obstructed the passing on of mtDNA disorders
to future persons' and that 'it is difficult to imagine how this could be what
its authors intended'.
But were the parliamentarians,
therefore, misguided in their declaration? In reply, it may be noted that the
response from Appleby et al may not have sufficiently emphasised the fact that an individual created from these procedures
would be a very different person from the one who would, otherwise, have
existed with the mitochondrial disease (4). This
is because personal identity includes the manner in which the individual was
brought into existence comprising the exact date, place and biological
characteristics. This identity cannot just be reduced to an individual's
Thus, what is
being proposed by the HFEA is not a form of therapy in which a person is being
treated or cured for a disorder. Instead, it is making sure that certain
persons are not brought into existence. This is a crucial difference since it then
questions the equality in value and worth of every possible future person.
Moreover, this equality of all existing and possible future human beings is one
of the foundations of inherent human dignity. The complex notion of human
dignity, of course, is difficult to define but it does not come in different
shapes and sizes. If it did it would be the end of civilised society.
context of Article 3 of The
Charter of Fundamental Rights of the European Union, which indicates
that 'In the fields of medicine and biology... the prohibition of eugenic practices, in particular those aiming at the
selection of persons' must be
respected, Appleby et al further query whether MST and PT can be
considered as eugenic in character.
In this respect, they are right to emphasise that it all depends on the
manner in which the concept of eugenics is defined. But the authors
continue by indicating that since no degree of coercion is being proposed, then
the procedures are either not eugenic or are not necessarily wrong. This,
however, is contentious. With respect to definitions, even Sir Francis Galton, who
coined the term 'eugenics' in 1883, did not restrict its meaning to coerced
procedures. Moreover, it is not because a procedure is consensual that ethical difficulties
do not arise.
impossible not to have sympathy for persons affected by mitochondrial disorders
and nobody can deny that they can experience a lot of profound suffering and
affliction. Society should do all it can to find a treatment or a cure to such
serious disorders. But this is quite different from making a consensual
decision that such people should not be brought into existence. Indeed, because
of the equality in value and worth expressed in the inherent dignity of all persons,
it is impossible to say that anyone, including persons with mitochondrial DNA disorders
or any other dysfunction, should not be brought into existence just because of their
genetic constitution. If this did happen, it would amount to a form of ableism which reflects practices
that only bring about a particular kind of person, who is considered as ideal,
while disability is perceived as a diminished state of being human.
The European parliamentarians
were correct, therefore, to be concerned about the legalisation of MST and PT
on the grounds of these and the other legal documents which they mentioned. On the basis of the equality of worth and
value of all possible future human beings, civilised society cannot accept that
a life unworthy of life can ever exist.