Catholic Medical Quarterly Volume 64(3) August 2014

Catholic Medical Association response to Department of Health consultation on mitochondrial donation.

MitochondrionFor more on this see under the news section above.

Thank you for the opportunity to respond to this very important consultation.

We understand that two possible methods of Mitochondrial Donation are being considered:

  1. Pro-Nuclear Transfer (PNT), where a healthy embryo is enucleated, and the intended mother’s pronuclei are taken from her faulty embryo and put into the enucleated healthy embryo. Because we see the value in every human life and this procedure involves the sacrifice of one life for another the Catholic Medical Association (UK) is completely opposed to this.
  2. Maternal Spindle Transfer (MST), takes a healthy donated egg and removes its spindle of chromosomes, and replaces it with the spindle from the mother’s faulty egg. Then this “repaired” egg can be fertilised by her partner’s sperm. We have serious reservations about this which reflect similar concerns about in vitro fertilisation.

In other consultations we have made it clear that we do not agree with Embryo Research, as an embryo is already the beginning of a new, unique, Human Being. While we understand that Mitochondrial Diseases can be very serious and distressing, and it must be “good” to find a way of avoiding them, such a good “end” cannot be used to justify the “means” by which it is executed. In the situation of PNT, where an embryo is destroyed, we do not believe this means can ever be justified. So in answering the nine questions in your Consultation, despite our overall reservations even with the other method, we only apply our reasoning to MST, where two unfertilised eggs are involved.

Question 1: Regulation 2 defines the removal or insertion of nuclear DNA involved in mitochondrial donation. Do you agree with this definition?

Q.1. We accept this simply as far as a definition is concerned.

Question 2: Regulations 4 (eggs) and 7 (embryos) only allow mitochondrial donation where all the nuclear DNA is transferred from an egg or embryo to another egg or embryo from which all the nuclear DNA has been removed. Do you agree with this description and restriction?

Q.2. The description starts to be misleading because other material, besides nuclear DNA, is being transferred. Due to our overall misgivings with the whole process, we cannot agree with the restriction you suggest. We would, in truth, rather advise a complete ban. However, we shall attempt to answer the other questions as best as we can.

Question 3: Regulations 5 (eggs) and 8 (embryos) require that, in order for mitochondrial donation to go ahead, the HFEA must decide that there is both a particular risk that the egg or embryo of the patient has a mitochondrial abnormality and a significant risk that a person with the particular mitochondrial abnormality will have or develop a serious physical or mental disability, a serious illness or other serious medical condition. Do you agree that the HFEA should have this role?

Q 3. In regulation 5 (eggs) it is emphasised that the HFEA must be satisfied that the inherited mitochondrial disease in question will be of a serious nature. We can see the wisdom of the HFEA’s need to be certain that the risk of serious physical or mental health problems is present without doubt. However, it should be pointed out that, whereas a mitochondrial abnormality may occur with a 1:200 frequency, the incidence of SERIOUS inherited disease is more in the order of 1:8500 (Nuffield Council). In most cases of mitochondrial DNA mutation, the affected persons do not exhibit symptoms. It is true that the pathogenic mutations could be passed on to subsequent generations, but such manipulations belong in the morally questionable realm of eugenics.

Question 4: Do you agree with the principle that licensed clinics should not be permitted to undertake mitochondrial donation without first obtaining authorisation to do so from the HFEA?

Q 4. Clearly, despite our opposition overall, we would agree that if this is to be done it is obvious that only fully licensed Clinics can be involved in this.

Question 5: Do you agree that people donating eggs and embryos for the purposes of mitochondrial donation should not have the same status as those donating eggs and embryos for use in fertility treatment, but rather be regarded more like organ or tissue donors?

Q 5. To a materialistic and utilitarian way of thinking it would seem clear that, as only some cell parts of a donated egg are being used, and if as claimed, no transfer of hereditary characteristics has taken place, then such egg donors could be seen as more like “organ or tissue donors”. However, mitochondrial genes, which are passed down from generation to generation by means of the maternal eggs, could be used to trace a person’s genetic and ethnic origins, on the maternal side, back for thousands of years. When the nuclear DNA from an egg is separated from the egg’s mitochondrial DNA and placed with mitochondrial DNA from another egg and made to form a new egg, the DNA of the new egg no longer serves as a true pointer back in time. It is not that a mixed message is given, a false message is given. The Law recognising the right of the child to know his or her genetic origins must be retained. The donor of the mitochondria is still, in part, a parent and not simply a donor of an organ/tissue (Agneta Sutton.”The Moral Costs of Techniques for the Prevention of Mitochondrial DNA Disorders”, Catholic Medical Quarterly. August 2013. Vol 63.No.3). Our decision then has to be a resounding “No” as the ancestral germ line sequence will have been changed.

Question 6: Regulation 10 provides that the HFEA should tell a person aged 16, on request, if they were born following mitochondrial donation. Do you agree with this?

Q 6. Yes, for reasons above.

Question 7: Regulation 10 also provides that the information that the HFEA should provide in response to such a request should not identify the mitochondrial donor and be limited to screening tests carried out on the donor and about her family medical history and any other non-identifying information that the donor has provided with the intention that it is made available in these circumstances. Do you agree with this approach?

Question 8: Regulations 13 provides that the HFEA should tell a mitochondrial donor, on request, when a child has been born from their donation, how many and their sex. Do you agree with this approach?

Q.7 & 8. It would seem reasonable to withhold the identity of the donor from the recipient and vice versa, as problems so readily proceed from this. The wisdom of the whole project must remain questionable, not just for the reasons that we have mentioned, but also because the need for non-disclosure will be less and less acceptable in a world where everything is expected to be increasingly transparent.

Question 9: Do you have comments on any other aspect of the draft

Q9. Apart from our complete opposition to PNT, where an embryo is destroyed, we are worried that children will be born with DNA from 3 “parents”. We are not confident that the transfer of such important DNA material may not have some other effect on the subsequent child’s existence. Even your Expert Panel, who reported in April 2011 & November 2012 (and is to report again we believe) can only claim not to have found any evidence that the procedures are unsafe; they advise more research on Primates, and long-term follow of the Human Beings involved. The changes to the 1990 HFE Act allowed by Parliament in 2009 are only to be permitted if they are “effective and safe”. Clearly safety cannot be guaranteed. We note that the UK is determined to lead the World in this area, but the EU & UN do not allow these procedures in humans, and there is no virtue in being first in an area where we may be acting unethically and be regarded as a “Rogue State.” We regret the fact that the UK has no means of developing a “National Ethical Framework” which could be used to help scientists find their way through these ethically difficult developments.