Media coverage on “3 person IVF” has admittedly eased up a bit after the House of Commons voted in favor of the proposed mitochondrial DNA (mtDNA) techniques that I talked about in my blog post from last week. However women affected with mitochondrial diseases as well as members of the bioethics community know the debate is far from over.
As the astute reader may have noticed, I deliberately tried to leave any firm opinion out of my previous ‘news update’ from last week. As safe as it may feel to hide behind a news report, one of the most reiterated lessons during my studies in bioethics is that we cannot be afraid to make normative statements. Translated into syllabus requirements: each week 2 students have to present an ethical analysis of a case study (10 minutes presentation, 10 minutes Q&A).
This week was my turn, and I had the timely opportunity to present on mtDNA transfer. To add to the excitement, this week we had class at the Nuffield Council on Bioethics— which meant that I was presenting on the turf of people who published a extensive (98 page) bioethical review of these techniques before publishing their endorsement in 2012.
If the PNT and MST techniques are proven to be acceptably safe and effective, on balance it would be ethical for families wishing to use them to do so. [5.2, p88]
After a quick hello, I cut to the chase: “my presentation today will look at a subset of concerns that challenges this conclusion.”
Needless to say, adrenaline was running high.
My assessment: UNETHICAL
There are long lists of points to consider in reviewing these new techniques, but since I only had 10 minutes, I tried to focus on areas that I felt have largely been brushed over in the publicized discussion.
1. The novel use of the human embryo
For some people… the merging of the [pronuclear] DNA from the parents to create an embryo with a unique genetic identity is morally significant. Those holding this view are likely to find [pronuclear transfer] morally preferable [to nuclear transfer] because of the higher moral status afforded to the embryo once this stage of development has been reached. Given, however, that the law permits research up to 14 days after fertilisation where it is ‘necessary and desirable’, and the BMA supports this position, the BMA does not consider this to be a relevant distinction in terms of developing policy for mitochondrial transfer. [4.58, p63]
I acknowledged the obvious question (Is the outcome of mtDNA transfer ‘necessary and desirable’?) but for time sake marked it for Q&A. Instead I focused on the assertion that this point was irrelevant to policy making.
Pronuclear Transfer (PNT) uses embryos in a way that is significantly different from previous reproductive treatments such as preimplantation genetic diagnosis (PGD) with in vitro fertilization (IVF)— a technique used to select embryos to reduce the probability of passing on deleterious genetic conditions. An oft cited argument (ie: Savulesco) in support of such technologies is that it is not logical to think that all embryos should deserve to live because (if we reference natural procreation with sexual intercourse) approximately 3-5 embryos are created and lost for every live birth.
Both proposed mtDNA transfer techniques would utilize this same selection step before implanting embryos in a woman. However, PNT first requires the creation of a ‘donor embryo’ for the specific purpose of harvesting its healthy mitochondria. This embryo is NOT created with the chance of being selected.
Those of you that have seen The Island (2005) in which wealthy people can create a spare body from which they can harvest necessary transplants, may understand why I cringe at this thought.
In evaluating the ethics of novel techniques like this, it may be most appropriate to return to first principles.
Instead of / in addition to asking: How can we match moral value with a quantifiable measurement (ie: number of cells, number of days old)?
Perhaps we ought to ask: Is it ethically acceptable to create embryos for the means of other embryos?
2. The increased need for egg donation
When compared with current artificial reproductive technologies (ie: PGD / IVF, donor egg) the proposed techniques require 2x as many eggs– one from the affected mother and one from the female mitochondrial donor.
The BBC reported… “HFEA says people should feel the same about [gamete donation] as they do about altruistic, or living, organ donation.” HFEA Chair Lisa Jardine was quoted in the Daily Telegraph as saying that she wanted egg donation to become ‘as obvious as blood donation’. [4.95, p72]
In a society that promotes a woman’s right over her body and sexual organs through widespread use of artificial reproductive technologies, contraception, and abortion (and paid for under NHS!) this assertion that altruistic women donate eggs is dubious.
But this is not just a discussion of societal norms, and the medical risks of egg extraction. (Note: There is ~10-14% risk of ovarian hyperstimulation syndrome for women that have eggs extracted.) This is also a discussion of justice.
We do not consider it appropriate for a regulator to set a limit on the number of times a mitochondrial donor can donate eggs for research or reproduction, other than to protect her from repeated ovarian stimulation. [4.149, p84]
Since 2012, NHS will pay women a flat sum of £750 (+ compensation for travel, childcare, accomodation, etc) per donation cycle. Currently, there is a ’10 family limit’ to prevent the dystopian situation where children produced from donor gametes might unknowingly have children with half-siblings. Without a limit on the number of donations that women could make, we amplify the concerns that we’ve had about incentivizing kidney donations– it bears a great risk of exploiting the poor.
One interesting analogy shared by a previous egg donor and published by Center for Genetics and Society is that “saying that financially struggling young women donate eggs out of the goodness of their hearts is like saying that poor men work in coal mines because they are so concerned that the rich have enough electricity.”
I give the UK the benefit of the doubt and say that it does not want to end up in a situation where we are shipping in donated eggs from women in impoverished countries where £750 could stretch a lot further than it does in London. So, are we willing to increase the commodification of our own English women? And mind you, because of our understanding of medical tourism, these English eggs will NOT just serve English people, but the wealthy.
3. The role of the affected woman’s voice
[Our son] was 2yr and 4 mths old [when he died of Leigh’s disease]. He had very little quality of life and was very ill and suffered greatly, as did the entire family. These last couple of years have been devastating beyond belief for all of us. We have one healthy daughter who is nearly 5. We would love more children to make our family complete but cannot take the risk this could happen again, so until our gene is found, we are pursuing donor egg options… We would 100% inform any child born of the techniques used, and feel strongly that the child would be grateful to have a genetic link to myself (mother) rather than no genetic link at all (with the donor eggs we are currently using). I believe the impact on the child would be minimal. It only takes me telling them the story of how our son died to make them realise why we would have pursued this technique to ensure another child didn’t suffer this way. We would 100% travel abroad for this technique, we are already going to Spain for our donor eggs… [4.99, p73-74]
I don’t think anyone would debate that this is a powerful account. And a history of patriarchy in medicine demonstrates why it is important to listen to the voice of the patient.
But while narrative accounts are not necessarily confined to rules of rationality, the arguments of bioethicists must be based in reason. We must recognize these voices as a member of the orchestra, NOT the director. The implication of letting emotion rule is not just detrimental to our arguments, but also to the affected group. Passion feeds on passion. If affected women were constantly told that this is unsafe or at least that the safety / efficacy cannot be accurately assessed because of many unknowns, I don’t think we would have statements like: I believe the impact on the child would be minimal.
So my final question: Is it ethical to emphasize an emotional narrative such that sincere risks are made less prominent?
1. When evaluating the ethical nature of novel biotechnologies, it may be necessary to return to first principles. As demonstrated with the examples of creating donor embryos via PNT and increasing the call for egg donation, relying on previous standards is inadequate.
2. Incorporating the patient’s voice into ethical debate is powerful. I contend that it is important to keep this voice, but we must proceed with much caution lest we let emotion overpower reason.
3. Based on the interplay between the patient’s voice and an ethical assessment– bioethicists must take responsibility for the endorsements they offer.
I braced myself for a brutal round of Q&A…so I was pleasantly shocked when the majority of responses agreed that I managed to address some important concerns. I hope by sharing this I have managed to provide some additional points for your consideration.
Over and out.
Some end notes:
– Featured image courtesy of Silvia Camporesi.
– Many thanks to the people that listened to my musings and helped me refine my arguments over pretzels in the park, through email, and via homing pigeon over this past week. Your support is greatly appreciated!