What do people think about genome editing? Part I

Questions about a recent survey by the Royal Society

 

In March 2018, the Royal Society of the UK published the results of a survey about genome editing that it had commissioned. Survey specialists had asked over 2,000 Brits about their views on potential uses of the technology, which is portrayed as a representative snapshot. The media commonly summarised the findings as “cautious optimism” about genetic technologies. The most notable finding is that about 75% of people were in favour of curing diseases with genome editing, done in such a way that genetic modifications would be inherited by future generations. This finding is significant because to make heritable genetic changes would first of all require changes in the law in the UK, in Europe, in the U.S., and beyond. This survey could, then, be taken as an argument in favour of political change. However, there are problems with the information respondents were given and with some of the questions they were asked, but also with the way the news media reported about the survey.

meta-chart
Pie chart from http://www.meta-chart.com/pie#/display

Approval of heritable changes?

The fact that about three-quarters of the UK population do not reject out of hand heritable genetic changes – that is, genetic modifications that would be passed on to future generations – is significant for various reasons. One of them is that only a minority of respondents saw the heritability of genetic changes as a reason to proceed with greater caution: if future generations are also affected by a single genetic intervention, then the effects might turn out to be beyond our control, and people might alternatively wish to restrict interventions. This is the idea of the so-called precautionary principle, which does not seem to play a prominent role for people, however.

This finding is perhaps a bit skewed because the question was worded in a leading way. Respondents were asked whether they favour “Using genome editing to correct a genetic disorder so that the correction would also be inherited by any children of that person”. Of course the word “disorder” already suggests the need to create “order”, but this is common usage. More problematic is the use of the verb “to correct”. After all, that which needs “correction” is by itself false and must be changed by definition. Here it would have been better to speak of “using genome editing to modify genes so they no longer result in a disorder”, for example.

It is also notable that over 80% of respondents approved of using genome editing to cure a life-threatening disease, whether or not the condition is otherwise curable (without the potential heritability of changes being mentioned). Further, over 70% affirmed genome editing for curing a disease that is not life-threatening. On the whole, participants distinguish between medical uses of genome editing and uses that are not medical but bring about a perceived physical improvement. In this latter area, approval rates are much lower: about a quarter of respondents agree with using genome editing for cosmetic changes in eye or hair colour, and almost a third approve of enhancing capacities, illustrated by the survey with increased intelligence.

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Alexas_Fotos at Pixabay, CC0 Commons

Here one difficulty is that we are far from a universally shared definition of intelligence, and even a genetically improved memory is, at the moment at least, scientifically unrealistic. Moreover, not everyone in the press got the numbers right. An article on the news site BioNews falsely stated that 40% of respondents thought positively about genetically enhancing characteristics such as intelligence, although with 32% the right number is significantly lower.

Heritable changes: The need for better information

The potential of changes that are heritable requires comment especially. Genetic changes that would be passed on to biological children seems to be the preferred way in which many scientists speak about the difference between so-called somatic changes and changes in the germline. However, another aspect should be mentioned as well: the time at which the change would need to be done, or the developmental stage. In modifying genes in children and adults, scientists would need to access a very high number of cells in order to change the body’s functioning and cure a disease. It would be much more efficient to modify the genes in an early embryo, which only consists of a few cells, and prevent the disease from the get-go. As the body grows, all cells would then reflect the genetic change, and that includes those cells that eventually bring forth egg cells or sperm. By contrast, egg cells or sperm are not affected when changes are done only in children or adults; these sex cells would continue to display the old, unaltered genetic pattern. For this reason, it is changes in embryos that would be passed on to future generations. However, the survey questions do not mention embryos, only the question of heritability.

Confronted with genetic changes that are merely described as “heritable”, a lay person might assume that the heritability of genetic changes would seem a less significant moral obstacle if at least their own physical condition improved. This has little to do with real life, however: heritable changes can only be made in embryos. Only individuals who are not yet born can profit from them. Heritable changes will make a difference only for embryos, not for people who have already grown into children or adults.

embryo_8_cells

Moreover, the fact that heritable changes mean changes in embryos is significant even if people are indeed aware that they themselves do not stand to benefit directly. For genetic interventions in embryos would give scientists and parents access to extremely wide-ranging changes, not only for the good. Even if we succeed in only changing those genes that we really wish to change and not others, it’s one thing to make small-scale, clearly defined changes, perhaps in “resetting” a simple harmful mutation. Certain diseases may, however, involve larger changes, and there we do not quite know how they would act in concert with the overall individual genetic make-up of the person.

This is a sensitive aspect, as the embryo is only just growing into a fully formed person, and small changes can have large effects as this complex process unfolds. So the effects of genome-wide influences could be more powerful with the modification of an embryo than in a grown person. In addition, changes in embryos might also open the door to futuristic genetic “enhancements” beyond medical needs. Such “improvements” would seem more feasible in modifying embryos than in modifying grown persons, but they raise moral questions of their own. So the modification of embryos requires deeper reflection, quite apart from the risk of changing the wrong genes and legal questions, and even apart from the potential risk that heritability could pose in future generations.

In addition, even if people are aware that heritable changes can only be made at the embryonic stage, it is not clear whether survey respondents knew how such modifications would be done. A lay person might wonder: in order to modify an embryo’s genes, would a doctor perhaps give a pregnant mother an injection in the belly, after she became pregnant through sexual intercourse? Then the procedure of genetic modification itself would not necessarily appear particularly burdensome. Yet this has nothing to do with real technical possibilities. The procedure would involve artificial fertilisation, genetic modification and then implantation, or IVF + genetic modification. Even if still futuristic, this procedure is significantly more complicated, and pregnancy through intercourse is not part of it. With all the background information about embryos and IVF, “making heritable genetic changes” may seem less attractive than it may appear at first glance!

… to be continued …

 

Sources

Hopkins Van Mill/Anita van Mil, Henrietta Hopkins, and Suzannah Kinsella, “Potential uses for genetic technologies: dialogue and engagement research conducted on behalf of the
Royal Society” (accessed 19 April 2018).

Hopkins Van Mill/Anita van Mil, Henrietta Hopkins, and Suzannah Kinsella, “Appendices to HVM report” (accessed 19 April 2018).

Kathryn Ashe, “UK public in favour of genome editing human embryos for disease”, BioNews 941, 12 March 2018 (accessed 19 April 2018).

The Royal Society, “UK public cautiously optimistic about genetic technologies”, 7 March 2018 (accessed 19 April 2018).

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