The Ethics of Playing God: Designing our Children with Gene Editing Technology

A recent article in Nature Biotechnology reports on the risks and benefits of the therapeutic use of CRISPR-Cas9 “gene scissors” technology. A comment on the article in the Jerusalem Post explains, “CRISPR – an acronym for “clustered regularly interspaced short palindromic repeats” – allows genetic material to be added, removed or altered at particular locations in the genome… [The researchers at Tel Aviv University found] that while the CRISPR genome-editing method is very effective, it is not always safe and that sometimes, rearranging pieces of DNA compromises genomic stability, possibly triggering cancer in the long run.”

So what ethical issues are raised by this technology?

Good ethics depends on good facts. Broadly defined, the human genome is the DNA, including genes, which constitutes each of us. We will pass on some of our genes to our descendants and manipulating these, which is possible with CRISPR-Cas9, is an unprecedented ethical issue, because it means we can attempt to design our children and their descendants.

We also have somatic cell genes, some of which can produce disease. These can also be changed with CRISPR-Cas9 technologies used as medical treatment, but the changes are not inheritable. This is the type of intervention discussed in the Nature Biotechnology article, where the main ethical issue, as with all new medical interventions, is whether the benefits of the treatment outweigh its risks and harms.

“Genetic scissors” technologies, such as CRISPR-Cas9, are a relatively recent and an ethically controversial addition to the exploding field of reproductive technologies, because, as explained, they can be used to “design” a human embryo and its descendants. To understand the ethical issues they raise in this respect, we need to locate them in a broader reproductive technology context, rather than simply viewing them in isolation.

Once upon a time, before the late 1970s, there was only one way that a new human life could come into existence: sexual intercourse between a fertile woman and a fertile man. Many couples saw the life they created as a gift from God and, whatever their child’s characteristics, loved and accepted them without question.

Unconditional parental love

The widely accepted societal value was that parents should love their children unconditionally, simply because they were their children. Women, especially, carried this value of parents’ unconditional love for their children for society as a whole.

A woman who abandoned her child was condemned much more forcefully than a man. Think of the young man from a wealthy family, who impregnated a maidservant, being shipped off by his parents to the colonies to “sow his wild oats”, while the maidservant was left destitute and caring for the child. People sometimes regarded the man, somewhat admiringly, as “clever” to escape responsibility, while the woman was shamed and scorned even more than just for being pregnant out-of-wedlock, if she abandoned or failed to care for the child.

One reason surrogate motherhood was met initially with such condemnation was that it overtly contravened the societal value, carried largely by women, of a parent’s unconditional love for their children. In short, this value was based on an assumption that a woman automatically and unconditionally bonded to the children to whom she gave birth; it was unthinkable that a woman would intentionally become pregnant with a prearranged plan to give up her baby as the recognition of surrogacy instantiated.

The reproductive technology revolution

The reproductive technology revolution changed not only the reality of having no option other than sole reliance on Nature to conceive a child, but also, for many people, their values governing reproduction. The most dramatic herald of this revolution was the birth in the United Kingdom in 1978 of Louise Joy Brown, the first “test-tube” baby. It is estimated that now more than eight million babies have been born worldwide using in vitro fertilisation (IVF).

Louise Brown was conceived from her father’s sperm and her mother’s ovum in a laboratory. Sexual intercourse was no longer the only way to transmit human life and interventions on the in vitro embryo, the earliest form of human life, were now possible.

This opened up the possibility that we could now choose our children, rather than loving them unconditionally just because they were our children, and, as time went on, we could increasingly intervene to design them according to the characteristics of the child we wanted.

CRISPR-Cas9 and subsequent developments of this technology are the most recent means for undertaking such design.

CRISPR-Cas9

CRISPR-Cas9 was discovered in 2012 and is best imagined as a molecular scissors. Scientists can use it to edit the human genome. Sometimes those genes are harmful or damaged. CRISPR-Cas9 allows the scientist to cut out such sequences of DNA and to insert replacement genes.

An ethically important distinction between genes in the germline and in somatic cells needs to be kept in mind. Changes to somatic cell genes are not inheritable and while such interventions can raise important ethical issues, they are not of the same kind or seriousness as those raised by changes to genes in germline cells.

Alterations to the genes of an embryo will be passed on to all descendants of that embryo. This type of intervention constitutes pre-empting evolution as the agent of genetic change. When there was no possibility of intervening intentionally to alter the human genome, which is estimated to have evolved over up to six million years, there was almost universal agreement that it would be wrong and unethical to do so. Many jurisdictions, including Australia, had laws prohibiting altering a human embryo’s genes in any way that would be inheritable. (That law has now been repealed.)

The consensus was that the human genome was the common heritage of humankind that must be held unmanipulated by us on trust for future generations.

By 2015, scientists were actively lobbying to change this view. An invitation-only meeting in Atlanta was attended by around 400 participants to discuss what the future position on altering the human germline should be.

Harvard geneticist George Church and his colleague, social psychologist Steven Pinker argued powerfully for allowing this research to proceed. They relied heavily on the technologies’ promise of doing great good in eliminating devastating genetic diseases. I argued against allowing this with respect to germline genes, a position on which I have since modified my views to a strictly limited extent. Pinker’s conclusion was that if bioethicists, such as myself, opposed this research, society should not prohibit it. Rather, it should get rid of the bioethicists. He won the argument. With certain controls, the research has gone forward.

So, why did I argue against intervening on the human germline?

My long preamble to this article situates the questions we need to ask about CRISPR-Cas9 in the larger context of the extraordinary development of reproductive technologies. This is necessary if we are to keep its use within ethical parameters.

IVF enabled the development of these technologies, because having a human embryo in a test-tube makes it much easier to manipulate it. If IVF, itself, is immoral and unethical, then genetic interventions on embryos become much more difficult and for some purposes impossible. The leading opponent of IVF, the Catholic Church, teaches that IVF is immoral because in separating the unitive and procreative characteristics of the passing on of human life through sexual intercourse, it unavoidably offends human dignity. However, its view is widely challenged.

Multitudes of thorny ethical problems have been raised both by IVF, itself, for example, the respect required for the transmission of human life outside the body of a woman, an issue we had not faced before IVF, and by the deluge of technological interventions and social changes to which IVF gave rise.

I will not discuss those here; rather, I will identify some of the specific ethical concerns raised by CRISPR-Cas9 when it is used to alter genes of the germline. Some of these concerns are common to many reproductive technologies, not just CRISPR-Cas9.

Ethical concerns raised by CRISPR-Cas9

First, let us find where we can agree. Everyone wants to eliminate or reduce suffering. The scientists wanting to use CRISPR-Cas9 to change an embryo’s germline genes want to eliminate horrible genetic diseases, such as Huntington’s chorea, muscular dystrophy, diabetes and so on. They make a distinction between therapeutic or curative germline interventions with CRISPR-Cas9 and enhancement ones, altering genes, for example, to augment intelligence or sporting ability, or to change eye colour, height, and so on. They argue for allowing the former, if not the latter.

But no matter how worthy their intentions, scientists would be designing or redesigning a human being. Transhumanists see this as creating a human utopia of the future. They speak of “unmodified humans” as inferior beings and foresee a future of immortality made possible by the genetic modification of genes responsible for aging. Do all humans, however, have a right to come from unmodified natural human origins and should this right be absolute or should some strictly limited exceptions be allowed?

The American Jewish philosopher, the late Hans Jonas, put it this way. “Every human being has a right to their own unique ticket in the great genetic lottery of the passing on of human life. A right not to be designed. A right to live their life as a surprise to themselves.”

German philosopher Jürgen Habermas has pointed out that the designed person is not free, because freedom requires us to have non-contingent origins to enable us to go back and recreate ourselves from scratch.  Moreover, they are not equal to the designer, because the designed entity is never equal to the designer. This analysis takes the issues raised by designing our progeny beyond concern just for the individual who is designed. It has political implications, because two of the pillars of democracy are respect for every individual’s freedom and accepting that everyone is equal.

To return to the earlier discussion of unconditional parental love as a personal and societal value, wanting to design one’s child to enhance them sends the message that “you were not perfect enough as you were naturally, we needed to improve you to conform to our specifications for us to accept and love you.”

Australian bioethicist Robert Sparrow from Monash University has raised another issue. He pointed out that just as our laptops and iPhones become obsolete models as the technology continuously improves, so earlier conceived children will be obsolete compared with their later designed siblings. What would this do to family cohesiveness and harmony?

A central, ubiquitous characteristic of the worldwide fertility Industry, which mostly markets reproductive technologies, is its overwhelmingly adult-centred focus and almost complete failure to place the future child at the centre of the decision-making. This is understandable: adults make the decisions to use reproductive technologies. The fertility industry is estimated to be worth US$8 billion each year in the US and $15 billion worldwide and continues to expand rapidly.

Child-centred decision-making

Child centred decision-making would ask, among many questions: can we reasonably anticipate, if this person were here and able to decide for themselves, that they would consent to what we are planning to do?

Child centred decision making would also look at the risks and harms of the technology to the child. Even if the technology were used only for therapeutic purposes, there are substantial risks, including unknown ones. For example, some genes exhibit a complex phenomenon called pleiotropy – one gene can code for multiple different proteins, possibly up to one thousand. Moreover, depending on its placement in the genome, the gene may function differently and a gene inserted with CRISPR-Cas9 might not position correctly. The presence of risk is not, however, an insurmountable ethical obstacle, it can be managed and an ethically acceptable risk/benefit ratio achieved.

Larger ethical questions raised by CRISPR-Cas9 at the societal level include treating our children as products or things that we own – as “somethings” not “somebodies”, a phenomenon called “reification” – rather than unique individual human beings with respect to whom we have obligations, but not rights to design.

Conclusion

The possibility of eliminating or treating dread diseases with “genetic scissors” technologies must not blind us to the ethical risks and harms involved.

It is very difficult, as I know from personal experience, to say to a scientist, who only wants to do good, “No, you must not change a seriously harmful gene in an embryo’s germline”. My concern about allowing such changes includes the precedent this would create that it is ethically acceptable to genetically-design a human being and where that would lead.

When CRISPR-Cas9 therapeutic interventions that do not involve inheritable changes, such as the ones discussed in the Nature Biotechnology article, are used to treat serious debilitating disease, they raise important ethical issues and concerns, but not the one of designing a human being and their descendants. They should be governed under the generally applicable medical research ethics principles, especially with respect to risk-harm/benefit calculations.

This year marks the 25th anniversary of Gattaca, the brilliant dystopian sci fi film about a future in which all children are supposed to be genetically engineered. The hero is an “in-valid”, a rare human who was naturally conceived. At one point he reflects, “I belonged to a new underclass, no longer determined by social status or the colour of your skin. No, we now have discrimination down to a science.”

CRISPR could make such a future possible, at least for those who can pay for it. Before we arrive there, we need to ask many more questions about the ethical dilemmas genetic engineering is creating.

An earlier version of this article first appeared in News Weekly.

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