Subscribe to the BioNews newsletter for free

Login
Advanced Search

Search for
BioNews

Like the Progress Educational Trust on Facebook


Multidisciplinary PGD: Redesigning the Patient Pathway


 

Mitochondrial replacement 'incompatible with human dignity', say European MPs

14 October 2013

By Dr Rosie Gilchrist

Appeared in BioNews 726

A group of European parliamentarians has criticised UK proposals to legislate for mitochondrial replacement therapy (reported in BioNews 711), calling it 'a eugenic practice'.

The statement, signed by 34 MPs of The Council of Europe, an international organisation representing EU and non-EU signatories to the European Convention on Human Rights, says 'the creation of children with genetic material from more than two progenitor persons [...] is incompatible with human dignity and international law'.

Earlier this year, following a review of the evidence surrounding mitochondrial replacement techniques, which are still under development, and a public consultation showing broad support for the techniques, the Human Fertilisation and Embryology Authority (HFEA) advised the UK Government to begin developing regulations to support its use in the clinic (reported in BioNews 698). The Nuffield Council on Bioethics conducted an ethical review of the techniques in 2012 (reported in BioNews 661).

Jim Dobbin, a British Labour MP who proposed the present declaration, said: 'essentially we are saying the HFEA is overstepping its mark here'.

The declaration highlights clauses from The United Nations Education, Scientific and Cultural Organisation's (UNESCO) Universal Declaration on the Human Genome and Human Rights, which states that 'germ-line interventions' could be considered as practices which are 'contrary to human dignity'. It also cites the Council of Europe's non-binding Convention on Human Rights and Biomedicine, which the UK has not signed, that prohibits modifying the genome of any descendants.

The recent declaration follows concerns raised by scientists last month that there is not yet enough evidence from animal tests to reliably support the use of the technique in the clinic (reported in BioNews 723). Jim Dobbin re-iterated this, saying to the Telegraph that 'animal models have not been 100 percent successful'.

'To try this in humans at this stage, in our view, is not very clever', he added.

The statement, which does not represent the view of the whole Council, was signed by 34 of the 318 members the parliamentary assembly.

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

09 June 2014 - by Alice Plein 
Two experimental IVF techniques that could prevent certain types of incurable genetic disease are 'not unsafe', a report from the UK's Human Fertilisation and Embryology Authority has found....
03 March 2014 - by Patricia Cassidy 
The UK Department of Health has published draft guidelines for the use of new techniques to prevent mothers passing on serious mitochondrial diseases to their children. The guidelines will be the subject of a three-month consultation...
03 March 2014 - by Chee Hoe Low 
The USA's Food and Drug Administration (FDA) is considering whether to allow human clinical trials of mitochondrial replacement, an IVF technique that uses gametes from three people...
20 January 2014 - by Professor Sandy Raeburn 
Having worked with families affected by genetic disorders for more than 40 years, both in the UK (with its multi-faith society) and in the Sultanate of Oman (where the majority are Muslim but other religions are allowed), I have seen and looked after many people with hereditary illnesses, including those with disabling mitochondrial conditions....
06 January 2014 - by Dr Calum MacKellar 
Mitochondrial replacement techniques are not a form of therapy in which a person is being treated or cured for a disorder, but instead make sure that 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...

23 September 2013 - by Dr Rosie Gilchrist 
A group of scientists has expressed concerns that it may be too soon to bring mitochondrial replacement techniques, which are still under development, to the clinic....
01 July 2013 - by Dr Rosie Gilchrist 
The UK Government is to support the introduction of mitochondrial replacement therapy. The IVF-based procedure could allow women with mitochondrial disease the opportunity to have healthy children, by replacing their own, faulty, mitochondria with healthy mitochondria from a donor....
21 March 2013 - by Sandy Starr 
Mitochondrial replacement therapy, where a small amount of a mother's genetic material is swapped with material from a donor during IVF to avoid passing on heritable illnesses, enjoys the 'general support' of the public, the UK's fertility regulator says...
29 October 2012 - by Joseph Jebelli 
Scientists have successfully created human embryos containing donated mitochondrial DNA in an effort to stop children inheriting life-threatening diseases...

HAVE YOUR SAY
Comment (BioVisitor - Updated on 14/10/2013)
I must respectfully disagree with suggestions raised that this declaration is in any way significant, in particular that of the Scottish Council on Bioethics which stated, in the wake of the Declaration, that "The UK would be breaking international law by allowing the genetic modification of descendants. It would be a very serious precedent and open the door to further genetic alterations of human beings resulting in grave risks for the future".  

It may be helpful to qualify this assertion, beginning with the status of the written declaration.  It comes, not with the imprimatur of the Council, but merely with the signature of 34 of its 318 Members of its Parliamentary Assembly.  Dubbing them "MPs" may suggest that they were voted into office: they weren't.

Examination suggests some clear reasons why the remaining 89% of Members might have rejected it.

First, the statement declares that the modification of human eggs or of early embryos for procreation using heritable (germ-line) interventions through the use of genetic material external to the entirety of the two parents' hereditary information (their genomes) is a eugenic practice.  It cites Article 3 of the Charter of Fundamental Rights of the European Union, which states that "In the fields of medicine and biology ‚Ķ the prohibition of eugenics practices, in particular those aiming at the selection of persons, must be respected".

This is nonsense.  First, mitochondrial transfer is not a selection process: that takes place afterwards, when the clinician decides whether to implant an embryo that may give rise to a child who will die in misery in its teens or a normalised one that won't.  Even if it were a selection technology, the selection concerns embryos, not persons.  Indeed, the rights of no person are, or can be, at all affected by this "selection".   However, even if it is "selection", it may presumably also be argued that, now that the possibility of mitochondrial transfer exists,  the prevention of its use so as to facilitate the birth of humans suffering from mitochondrial defects IS a eugenic practice of a singularly contemptible sort.  Besides being a deliberate assault on the bodily integrity of future individuals, contrary to Article 3 of the Charter, this would be a fundamental attack on the dignity of those future individuals, contrary to Article 1.

In any event, it hardly matters to the HFEA.  By a Protocol to the Lisbon Treaty, the United Kingdom can be sure that the Charter does not extend pre-existing UK law in any way.

Second, the statement declares that the UNESCO Declaration on the Human Genome and Human Rights indicates in Article 24 that "'germ-line interventions' could be considered as practices which are 'contrary to human dignity'".

Notably, the UNESCO Declaration does not say that all germ-line interventions are "contrary to human dignity".  The word "could" suggests that this possibility is the exception to a norm: that such interventions are unlikely to be offend human dignity.  This belief is very well founded.

The right of human dignity derives from the 1948 United Nations Declaration of Human Rights, where it clearly requires a person.  Neither things without bodies (which do not begin to emerge, in man, until 14 days after fertilisation) nor societies have any dignity right.

Of course, if the practice of mitochondrial transfer resulted in the appearance of individuals suffering from serious physical or mental debilities, and was then practised for that purpose, then it could assault the dignity of those individuals.  After their birth, when they do become persons, they could perhaps bring a form of wrongful birth action. It would, however, be decidedly tricky: until there is a person, there is no dignity to be assaulted.  Of course, the very aim of the mitochondrial transfer techniques is to avoid the occurrence of serious debilities, by enabling the birth of normal, healthy babies.

Third, the Declaration points to the Council of Europe's Convention on Human Rights and Biomedicine (the Oviedo Convention), which indicates in Article 13 that "an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants".  The Declarants then refer to the Convention's "explanatory report" to Article 13, which states that "Interventions seeking to introduce any modification in the genome of any descendants are prohibited.  Consequently, in particular genetic modifications of spermatozoa or ova for fertilisation are not allowed".

Neither the United Kingdom nor the European Union is a signatory to the Oviedo Convention, so this objection is irrelevant to UK law.  Nevertheless, it helps to illustrate a problem of principle with the claims of the Declarant members.  The expression "the human genome" is not defined, but may be understood in either in the particular sense (as in the mother's genome) or in the general sense (as in "the first draft of the human genome was published in 2001").  If we consider the general, then there is no change: the mitochondria are transferred from humans, not snakes, bats or tomatoes.  The "human genome" of descendants would therefore remain unaltered.  It is entirely consistent with the UNESCO Declaration on the Human  Genome, which states on Article 1 that, "The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity."

If we interpret the expression, "the human genome" in the particular, non-UNESCO sense, then we may be certain that, unless is she cloned (which I doubt the declarants had in mind!) the mother's genome will never be transmitted to her children or descendants. This is because the very nature of sexual reproduction, including that facilitated by IVF, is to shuffle genomes within a population of individuals.  The genome of any descendants will, necessarily and unavoidably, be unique.  Indeed, the absurdity of the idea demonstrates that the reference to "the human genome" in Article 13 can only be a construed in the general, UNESCO sense.  The language of Article 13 of the Oviedo Convention is itself plainly permissive.  Turning to the explanatory report, the aim of mitochondrial transfer is not to modify the genomes of descendants.  Even if it were, it would be impossible: those future individuals will have the genomes that they are born with, which will spring into existence no sooner than when they are conceived; there is no danger of such future genomes being modified.  As the precondition is impossible, the consequent prohibition is ludicrous.

For all these reasons, I would advise readers to take the Declaration with a very large pinch of salt.

Julian Hitchcock
Clarification (Julian - Updated on 15/10/2013)
In saying that MPs were not voted into office (above), I mean that their national constituents did not elect them as members of the Parliamentary Assembly of the Council of Europe. They are of course elected as national MPs. I apologise if this was unclear.
Comment (tayside - Updated on 15/10/2013)
May I add to the comments above that the Scottish Council on Bioethics does not speak for all sections of Scottish public opinion on the issue of mitochondrial replacement therapy. As a member of the Humanist Society Scotland and as its Bioethics spokesperson, and on behalf of the HSS, I submitted a Response to the HFEA Consultation in which we approved of mitochondrial research and applications. I fully support Dr Morley in her comments posted here. Those of a secular mind in Scotland who are interested in mitochondrial replacement therapy are aware of the religious dogmatism of some parts of the faith community when it comes to certain genetics issues, which is why we seek to set the record straight when any impression might be imputed that a body like the Scottish Council on Bioethics speaks with authority on this matter.

Terry Martin
Comment (gefbrind - Updated on 15/10/2013)
34 out 340 ! 10% by my calculation. It is true what they say, "empty vessels make most sound". I am sick and tired of these secular biggots spouting religious nonsense. I will guarantee that non of these people have been touched by mitochondrial disease. They certainly don't speak for me. Religion does nothing but hold us back. Nobody is forcing these people who hold these views, to use this technology. They can stay in the dark ages. But I would bet they would hold different views if it was their family.

You need to or  to add comments.

By posting a comment you agree to abide by the BioNews terms and conditions


- click here to enquire about using this story.

Published by the Progress Educational Trust


RETHINKING THE ETHICS OF EMBRYO RESEARCH
Genome Editing, 14 Days and Beyond

Public Conference
London
7 December 2016

Speakers include

Professor Magdalena Zernicka-Goetz

Dr Kathy Niakan

Professor Sir Ian Wilmut

Lord George Carey

Baroness Mary Warnock

Dr Simon Fishel

Professor Bruce Whitelaw

Professor Alison Murdoch

Professor David Jones

Professor Sarah Franklin

Professor Stephen Wilkinson

BOOK HERE

Good Fundraising Code
 
Become a Friend of PET HERE and give the Progress Educational Trust a regular donation