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Where do we draw the line at acceptable and ethical gene editing?

31 May 2023

Are we dangerously close to creating ‘designer babies’? How do we regulate this process? Does the ‘third parent’ have any legal rights? The use of mitochondrial donation treatment (MDT) has spurred some serious questions.

In his novel Inferno, author Dan Brown explores the debate around genetic editing and modifications. As he argues through his character Sienna Brooks, “we as humans have an obligation to participate in our evolutionary process… If we don’t embrace [these human advancements], then we are as undeserving of life as the caveman who freezes to death because he’s afraid to start a fire.”

With every one of these advancements, our social and scientific principles are challenged. To illustrate, in early May 2023, a baby in the UK was born using three sets of DNA. Most of the DNA came from the baby’s two biological parents and about 0.1% from a donor woman.

Using mitochondrial donation treatment (MDT) or mitochondrial replacement therapy (MRT), tissue from the eggs of healthy female donors is used to create in vitro fertilisation (IVF) embryos free from harmful mutations.

Currently, only people at a very high risk of passing onto their children a severe mitochondrial disease, a genetic condition that affects how mitochondria in your cells produce energy, are eligible for this treatment.

The condition can only be maternally inherited and most commonly affects a patient’s heart, kidney, skeletal muscle and brain. The MDT procedure removes the “faulty” DNA from the mother’s egg using a small pipette, leaving behind healthy mitochondria. The DNA from the mother is then transferred to the donor egg.

There is a concern about eugenics and the reinforcement of a narrow definition of normalcy.

During embryo development, as cells replicate, they inherit both the mother and father’s DNA in their nuclei, as well as the egg donor’s mitochondria and mitochondrial DNA.

Although this was the first instance of this procedure in the UK, the technique was first seen in 2016.

As headlines cropped up in recent weeks, the process has spurred some serious overarching questions. For instance, where do we draw the line at acceptable gene editing? Are we dangerously close to creating “designer babies” through such procedures? How do we regulate this process? Does the “third parent” have any legal rights?

There are various ethical considerations.

First, more research is required on the long-term impact of these genetic modifications on affected individuals, since the safety of the technique is yet to be established. There is little insight into how future generations will be impacted by this procedure.

Second, there is a concern about eugenics and the reinforcement of a narrow definition of normalcy.

Third, from an ethical standpoint, scientists and ethicists argue that heritable genetic modifications may widen the inequities in society as concerns around access and “inaccess” crop up. Embedded in this argument is the importance of the principle of informed consent.

In South Africa, under the National Health Act (NHA) 2003, a patient must: be aware of their health status unless this is not in the patient’s best interests; be aware of the available procedures and treatments along with the associated benefits and risks; and have the right to refuse treatment based on the risks and obligations.

As we venture into new territory with procedures such as MDT, it is imperative that all three parties are acutely aware of the potential risks, benefits and long-term implications.

While MRT is permitted in the UK, Ukraine and Greece, there are other regions where the procedure has either not been considered yet or is prohibited. In the US, for instance, Congress has included provisions in annual federal appropriations laws since 2015 that prohibit the Food and Drug Administration from accepting applications for clinical research using MRT.

There is little indication that the technique has been considered in South Africa. The prevalence of mitochondrial genetic disorders in the country is largely unknown, calling into question the validity of this treatment in our context.

As an editorial in the South African Medical Journal in 2016 asserted: “In order to enter the debate… we should at least be able to predict the number of women who would benefit in this country, as was done for the UK and the USA.” Yet, as the authors concluded, there seems to be an underreporting in South Africa, which gives impetus to debate around the use of the technique.

While it is true that there are three sets of DNA involved, does this extend to the bounds of parenthood or not?

Finally, what of the question of parenthood? As Jennifer Barfield, assistant professor of assisted reproductive technologies at Colorado State University, argues, it is important to make the distinction between nuclear DNA and mitochondrial DNA.

The majority of proteins in a body are encoded by DNA located in the nucleus of cells, determining traits like hair colour, height and nose size. Meanwhile, genes found in mitochondrial DNA primarily play a role in energy production and metabolism.

Read more in Daily Maverick: WHO guidelines on human genome editing: why countries need to follow them

In other words, based on this argument, there is no case to be made for parenthood, but rather donor rights apply. Yet, as Saxena et al argue, the child does have genetic content from three different parents, which requires further legal scrutiny. Additionally, the authors argue that a social component of this relationship must be considered.

What is apparent is that MDT presents a new frontier in assisted reproductive technology. It is important to note first that we must consider the impact of three-parent DNA.

Which side of the debate do we err on? While it is true that there are three sets of DNA involved, does this extend to the bounds of parenthood or not? Then, we must carefully consider the other moral and ethical concerns surrounding procedures such as MDT as outlined above.

The consensus is that we must proceed cautiously when using these new technologies. Saxena et al argue that the technique is a boon for segments of the population impacted by the mitochondrial disease who have little hope for a cure. But can we proceed without understanding the long-term consequences?

Finally, if this is indeed a technique that is gaining pace, we must outline regulations and legal frameworks accordingly. As I have demonstrated on this platform recently, the law has to keep up with technological developments. While this procedure seems to leave us with great uncertainties, it is clear that we have to consider a stance, or risk being the “caveman who freezes to death”, to allude back to the words of Dan Brown. DM

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