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Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

The situation is complicated because therapy will need to continue for the rest of the child’s life. The child’s parents are brought in for further discussions, counselling and education. It is not clear whether they will comply with the regular requirements for enzyme replacement therapy, which must be given intravenously every two weeks. Questions are raised about whether the child should be brought into care to ensure the treatment continues.

The parents’ lawyers point out that the treatment is very expensive: $200 000 USD per year. It is not cost-effective according to the formula employed in their country, and distributive justice should preclude its use. They argue their child should be left alone. It is not only their wish but it is also required by justice.

Hypothetical Case 2: Gene Editing

The second hypothetical case takes place several generations later. Gene editing has advanced and has been shown to be safe, with few, if any, off target mutations. The couple are undergoing IVF because they know they are also carriers of Gaucher’s Disease and they hope to be able to select an unaffected embryo. Yet after multiple IVF attempts, they produce only one embryo and prenatal diagnosis confirms the embryo is affected by Gaucher’s Disease. Nonetheless they wish the embryo to be implanted. It is very unlikely they will produce another embryo and they don’t want to adopt. Their reasoning is the same as the parents in hypothetical 1: “It is God’s will. We are Christian Scientists. We will pray for God to cure the disease.”

Doctors are willing to transfer the affected embryo but point out that now gene editing could cure the disease. They could correct the genetic mutation so that the body naturally produces the normal amounts of the enzyme, glucocerebrosidase. This would be a one hit “silver bullet” that would cure the disease for the rest of the child’s life. It would correct the root cause: a genetic mistake. There would be no fortnightly injections. And it would be very cost-effective. Instead of costing $200 000 per year, every year, it would be a single cost of a few thousand dollars.

The parents continue to refuse on religious grounds. They believe prayer will cure their child.

Courts have previously authorised blood transfusions for children when parents have refused because they are Jehovah’s Witnesses. Courts might authorise enzyme replacement therapy if it were to prevent serious brain or other irreversible damage.

If it is in the child’s best interests to enforce enzyme replacement therapy, does the same reasoning apply to gene editing to correct such genetic disorders?

Nuffield Council Report on Gene Editing

The Nuffield Council on Bioethics has just produced an illuminating, thoughtful and provocative report on gene editing. In a nutshell, they argue that is an important potential tool in the fight against disease, and even to promote human well-being more generally (enhancement). However, the science must mature and they argue at this point for further research, but only after adequate public consultation and then law reform.

They are surely right. But the issue perhaps even more morally weighty than they credit. What is at issue is the fundamental correction of genetic mutation, the root cause of genetic disorders, and also a contributor to many common diseases.

You might think that it is within the zone of parental discretion to refuse enzyme replacement therapy in Gaucher’s disease. And so you might think it is in the zone of parental discretion to refuse gene editing for major genetic disorders. The Nuffield Council certainly doesn’t consider whether gene editing could ever be compulsory. But the very complexity and gravity of such a decision in these hypothetical cases illustrate what is at stake.

At the very least, children should have the chance to grow up unhindered by curable major diseases. For this reason, although we will face challenging ethical decisions like these,genome editing research is compulsory.

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7 Comment on this post

  1. The issue at stake here seems less about gene editing per se, but if there are limitations on a parent’s ability to refuse treatment for their children if and when gene editing becomes a (relatively) commonplace and effective form of therapy. In such circumstances the status of gene editing will be no different to that of blood transfusions, or vaccines. Thus, it is not the gene editing itself that is significant here.

    What seems more significant about these cases is whether or not embryos fall into the category of child i.e. a being to which the notion of best interests can be applied such that parental decision-making can be overruled. There also seems to be a secondary question implicit in the cases: might parents be able to refuse one kind of treatment (gene editing) in favour of another (ERT), even if the latter is a less successful form of treatment than the former.

    Little is being established about gene editing being compulsory when the best interests of a child/ embryo are not at stake, say for reason of enhancement, or if an adult patient could refuse gene editing therapy for a late(r) onset genetic disease (especially if genetic treatment were significantly less costly that the care that would otherwise be required).

  2. Interesting post, thank you . Unlike Nathan, I do have the intuition that it would somehow be different to force the changing of the genome rather than medical treatment.

    I suppose if people find the non-identity problem a reason to refuse genetic selection (if I understood it correctly), then it might apply to genome editing- just as in genetic selection the foetus and its siblings that you are choosing from are a mixture of quite a bit of the same genetic material, and some different material, so in genome editing will the edited foetus and its unedited self be a mixture- some the same and some different. At what point are the changes enough in number or significant enough in effect that it is considered a completely different person than it would otherwise have been? With this and mitochondrial transfer etc we will presumably have to at some point either pick a line where we consider the person to have become a different person (or make a final decision we don’t really care about identity after all and prefer projected wellbeing instead).

    But if you were fully subscribed to the genetic code as the basis of establishing the person as the individual then you could say to demand genome editing is like demanding the first couple abort their foetus when it was diagnosed and adopt another baby – yes, they will have a healthy baby, but it won’t be *that* healthy baby.

  3. Good point Sarah. That could be a consideration, especially when dealing with disorders that significantly affect the brain and mental states. It would not apply in cases like cystic fibrosis or thalassaemia, where the brain is not directly affected. If someone cured my asthma, it would still be me. If someone cured Down syndrome, you are right they might have ended the life of that individual and replaced them with a different individual with a higher intelligence. That would be like genetic selection.
    It is important to recognise that even if the embryo is not a person or like a child, it will become a child. There is a future child. Thus failing to correct a genetic mutation will harm a future child, even if the embryo now is nothing more than a bunch of cells. But you are right, Sarah, that some cases of gene editing would not be preventing harm to a future child, but replacing one future individual with a different future individual because of the gravity of the psychological changes. So even if some gene editing were compulsory, this would not mean that all gene editing even to treat severe disease, should be compulsory.

    1. Thanks for responding

      “It would not apply in cases like cystic fibrosis or thalassaemia, where the brain is not directly affected”

      That may be where you draw the line, but wouldn’t it be reasonable for others to draw the line elsewhere? For example, you selected removing asthma as something that would not affect your identity. Recent news has highlighted that a surprisingly large number of professional cyclists suffer from asthma. It could be that they were encouraged to take up sport as children as a way of improving their asthma and therefore it might- as it happened- have indirectly led to their becoming professional cyclists which they would probably go on to say is a large part of their identity.

      Equally, the fact their muscles work a certain way, that they have large lung capacities, or other non-brain but genetically established attributes were probably responsible for them being good at cycling when they tried it, and therefore enjoying it, and doing it to an extent where it becomes part of their identity. Or even for the average person, being a person who is good at sports or bad at sports is often one of the first kind of ways people separate out different identities as children from one another, but it might have little or nothing to do with your brain. Some in the deaf community have argued against curing their children’s deafness even when it is possible for similar reasons. So it doesn’t seem as simple to me as saying the brain is where the identity lies.

      I’m not really arguing against gene editing though – I think the future child’s wellbeing is way more important than preserving whatever its embryonic identity might be.

      1. I think Sarah is correct here, either the genetic identity problem is absolute (in which case any change is significant qua identity and the road to parental objections on the grounds that altering the genome is qualitatively different to other forms of treatment is open) or it is a sorites problem (in which case we might wonder what other treatments might be or become compulsory – from folic acid to ectogenesis). The latter seems the more appealing position, but then we require some way to distinguish between treatments or interventions that are compulsory or those that are not, if indeed any are.

        Prefacing serious moral obligations – enough to justify compulsory interventions – on the notion that there is a future child seems to open all sorts of questions – what about frozen embryos from IVF, or those used in research. I still think what is significant here is the question of compulsion – its justification – not the matter of editing the genome per se.

        As an aside, I had the following thought, what if gene editing cured Stephen Hawking’s ALS. Given its late onset, he would still be a genius, but would he have become ‘Stephen Hawking’? It needs thinking through, but it seems to me that late(r) onset genetic conditions indicate that genetics and environment cannot be considered properly distinct when it comes to the identity problem. Hence I go for the sorites problem, rather than the all or nothing account of genetic make-up.

        1. “Prefacing serious moral obligations – enough to justify compulsory interventions – on the notion that there is a future child seems to open all sorts of questions – what about frozen embryos from IVF, or those used in research. I still think what is significant here is the question of compulsion – its justification – not the matter of editing the genome per se.”

          I’m not sure frozen or research embryos cause a problem for the future child test of interventions, though. If when IVF was being developed, frozen embryos had been proven to lead to a significantly reduced wellbeing in the children that were born e.g. a much greater risk of severe disability, we would no doubt have banned their use until the technique could be improved because it would be detrimental to the future child that was produced. But an embryo used for research is not going to be a future person so researchers can do what they want with it without regard to its health, but there are usually strict rules about destroying them at a certain point in their development, precisely in order to stop them becoming a child in the future (or even before there is a risk of it having some of the important characteristics of a child e.g. the ability to feel pain).

          The best arguments against applying best interests to future children as well as actual children seem to me to be that it requires overriding the rights of an already existing person (the mother) by compelling her to act a certain way (e.g. for that reason giving up alcohol during pregnancy is advised but not compelled). But in the case above, it would not require the mother’s rights to be impinged on at all.

  4. Parents are Christians by half: they rely on God’s will to cure the child, but they resist the will of God using IVF (ie, a method that is unacceptable according to religious canons).

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