Genetic Engineering

Professor Michael Reiss, who is Professor of Science Education and Head of Science and Technology at the University of London Institute of Education and also a priest in the Church of England, looks at the controversial field of genetic engineering and considers its possibilities as a means to healing and wholeness.

This article was first published in the Autumn 2001 issue of Chrism. The author's profile below is from the same date

Michael Reiss is Professor of Science Education and Head of Science and Technology at the University of London Institute of Education, a Priest in the Church of England and a former Vice-President of the Institute of Biology. Before taking up his present position, he was a Lecturer in Education at the University of Cambridge and a Senior Lecturer in Biology and then Reader in Education and Bioethics at Homerton College, Cambridge. He was an invited expert to the 1994 UK Consensus Conference on Plant Biotechnology and is an adviser to a range of organisations on biotechnology issues. He is a member of the UK Government's Advisory Committee on Novel Foods and Processes (ACNFP) and Chair of EuropaBio's Advisory Group on Ethics. He is the author of a number of books including ‘Improving Nature? The Science and Ethics of Genetic Engineering’ (co-authored with Roger Straughan and published by Cambridge University Press).

© Guild of St Raphael

Should we make People in our own Image?

Genetic engineering of any sort is controversial. Some people see it as tampering with matters that we should leave well alone. Others hope that genetic engineering will help provide us with more food, better medicines and other benefits. But are there circumstances in which we should genetically engineer people? This is a possibility which alarms many, especially given the various abuses of eugenics in a number of Western countries in the last century.

I shall restrict myself to cases where humans are themselves being genetically engineered. This means, for instance, that I won't consider such topics as xenotransplantation—when animals such as pigs are genetically engineered to make organs from them suitable for transplantation into humans.

Nor shall I look at the issues resulting from the production of such products as genetically engineered human growth hormone or vaccines—when micro-organisms, animals or plants are genetically engineered to produce human proteins. (However, if you would like the e-mail address of a firm apparently called Youth 21 which sells 30 days supply of human growth hormone for just $69.95 plus shipping and handling, you can get in touch with me.) Nor shall I cover cloning— which deserves a lecture all to itself.

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The genes that every organism carries inside itself are codes or instructions: they carry information which is used to tell the organism what chemicals it needs to make in order to survive, grow and reproduce. Genetic engineering typically involves moving genes from one organism to another. The result of this procedure, if all goes as intended, is that the chemical normally made by the gene in the first organism is now made by the second.

Genetic engineering can take place in one of two ways—one that involves the genetic engineering of germ-line cells, the other the genetic engineering of somatic cells. Germ-line cells are the cells found, in mammals, in the ovaries of a female and the testes of a male and give rise, respectively, to eggs and to sperm. Somatic cells are all the other cells in the body.

The importance of this distinction is that any genetic changes to somatic cells cannot be passed on to future generations. Changes, on the other hand, to germ-line cells can indeed be passed on to children and to succeeding generations. For this reason, changes to germ-line cells generally have wider ethical implications than changes to somatic cells.

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Theologians and others who take religious teachings seriously have not been slow to voice their opinions about genetic engineering. The most frequent response by religious writers is one of caution or hesitancy. Some people are concerned that we are building a tower of Babel with its top in the heavens and so moving into areas more appropriate for a Creator than for created ones.

Others hesitate about the movement of genes between humans and other species, fearing that this somehow diminishes the distinctiveness of being human. For example, the notion that humans are made imago Dei, in the image of God, may cause some with a Christian faith to feel uncomfortable about a technology that apparently threatens to blur the dividing line between humans and the rest of the created order (cf. 1 Corinthians 15.39: ‘For not all flesh is alike, but there is one kind for men, another for animals, another for birds, and another for fish’). Mary Douglas once wrote that ‘holiness means keeping distinct the categories of creation’.

On the other hand, there are religious writers who are quite positive about some sorts of genetic engineering. Ronald Cole-Turner has explored the implications of humans acting as participants, through genetic engineering, in redemption. The idea is that genetic engineering can help to overcome genetic defects caused by harmful mutations. In this way genetic engineering can help to restore creation to a fuller, richer existence and can, Cole-Turner maintains, play an important role without encroaching on the scope of divine activity.

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The first successful attempts to genetically engineer humans were carried out in 1990. These attempts involved patients with a very rare disorder known as severe combined immune deficiency (SCID) in which the immune system doesn't work. As a result the person is highly susceptible to infections and usually dies in childhood.

SCID can have a number of causes but is often due to an inherited deficiency in a single enzyme—adenosine deaminase (ADA). The first person with SCID to be treated with gene therapy was a four-year-old girl called Ashanthi De Silva. She was unable to produce ADA and in 1990 some of her white blood cells were removed, and functioning versions of the ADA gene introduced into them using a virus as a vector. At the same time she received conventional treatment. The improvement in her condition was remarkable. Ten years on she is living a comparatively normal life, attending a typical school and so on. At present she needs regular transfusions (every few months) of genetically engineered white blood cells as the white blood cells live less than a year.

To date, many hundreds of trials for somatic gene therapy have been approved world-wide, mostly in the USA. In addition to trials on people with SCID, somatic gene therapy is being tried for a number of other conditions including cystic fibrosis, familial hypercholesterolaemia, Duchenne muscular dystrophy, haemophilia, b-thalassaemia and cancers. In some cases, the results have been very encouraging, though progress has been slower than hoped.

It is easy to hope that gene therapy will soon be a cure for all our problems. However, some human diseases caused by faulty genes can already be treated quite effectively by conventional means. For example, every baby born in most Western countries is tested for the genetic disease phenylketonuria. The reason is that, provided action is taken soon after birth, the harmful consequences of the condition can be prevented.

Phenylketonuria is a condition which, if untreated, leads to the person being severely mentally retarded. Affected individuals often have convulsions and, in the past, were frequently institutionalised. In the 1950s, though, it was realised that if children with the faulty gene that causes phenylketonuria are given a diet that has only small amounts of the amino acid phenylalanine, they grow up healthy and normal.

Phenylketonuria illustrates a most important truth about human development: both genes and the environment play essential parts. Phenylketonuria is a genetic disease in the sense that it is the result of a faulty gene but the extent to which the disease manifests itself depends on the environment. A normal diet (i.e. normal environment) and the person is severely affected; a special diet (i.e. a different environment) and the person is unaffected. To describe phenylketonuria, or any other condition, as a ‘genetic disease’ is, at best, a convenient shorthand.

A second reason why we should not see gene therapy as the likely solution to all medical problems also relates to the roles played by genes and the environment. Frequent announcements in the press that the gene for breast cancer, cancer of the colon, Alzheimer's disease, schizophrenia or whatever has been identified may appear to offer the hope for a cure. The reality, though, is often far from this.

For one thing, knowing what causes a condition may be a valuable step in preventing it, but it is most definitely not the same thing. I am unable to speak Russian or play the violin and I know why I can't. But knowing this is no more than the first step in helping me achieve these ends. In the same way, knowing which of the many human genes causes a disease is a very long way from treating, curing or preventing it. Initially it simply offers the possibility of genetic screening.

Additionally, diseases such as phenylketonuria are the exception, not the rule. This condition is caused by an inborn error in a single gene. However, less than 2% of our total disease load is due to errors in single genes. Most human diseases have a strong environmental component, so that genetic defects merely predispose the person to develop the condition. In addition, the genetic component is the result of many genes so that simply restoring one may not be enough.

A further point is that we are only just beginning to appreciate the extent to which the human body, and mind, can overcome genetic handicaps. Particular genetic mutations certainly increase the risk of an individual developing certain cancers or heart disease. Similarly, there may well be genetic mutations which increase one's risk of developing schizophrenia or depression. However, this is very different from saying that there is ‘a gene for breast cancer’ or ‘a gene for schizophrenia’. In the case of breast cancer, early indications are that while a mutation in the BRCA1 gene greatly increases a woman's chance of developing breast cancer, it is still the case that at least 15% of women with this mutation do not go on to develop breast cancer. Further, it is probable that many women with a history of breast cancer in their family do not have a mutation in this gene.

So far I have confined myself to what we may term ‘real human diseases’. But what of gene ‘therapy’ to affect traits such as intelligence, beauty, criminality and sexual preference? Will this ever be practicable?

Although there are frequently reports in the popular press of ‘a gene for homosexuality’ or ‘a gene for criminality’ the above discussion of the complexity of human disease should caution us against such simplistic notions. True, it is the case, as shown by twin studies, cross fostering and other evidence, that much human behaviour has a genetic component to it. However, attempts to find genes for homosexuality, intelligence, beauty or criminality are, at best, the first steps to understanding the rich and complex ways in which we behave. At worst, they are misguided attempts to stigmatise certain members of society. Part of the very essence of our being human is that we, above all the other organisms with which we share this planet, have the potential to transcend much of our biological heritage.

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What new ethical issues are raised by somatic gene therapy? The short answer, when we are talking about real human diseases, is: probably none. This was the conclusion reached in the UK by the report on the ethics of somatic gene therapy produced by the Clothier Committee in 1992.

Of course, somatic gene therapy is still a very new technique, and mostly at the research rather than the clinical stage. However, there is considerable agreement about how medical research and innovative practice should be regulated in the light of ethical considerations. There is little doubt that ethical considerations have so far been applied to somatic gene therapy even more stringently than to conventional medicine.

Although the UK government waited over a year to respond, it eventually accepted the recommendations of the Clothier Committee. Other countries too have permitted somatic gene therapy. Because somatic gene therapy typically involves giving a person healthy DNA to override the effects of their own malfunctioning DNA, it has been pointed out that this is not very different from giving a person a blood transfusion or organ transplant. Of course, some individuals may choose not to have a transfusion or transplant, but very few people suggest forbidding them entirely.

It is also the case that somatic gene therapy has the potential to reduce the number of ethically problematic decisions. For example, at present the only ‘solution’ offered to a woman who is carrying a foetus identified as having a serious genetic disorder such as cystic fibrosis or muscular dystrophy is the possibility of an abortion. Somatic gene therapy may be able to offer a more positive way forward.

However, somatic gene therapy may, in time, raise new ethical issues. Suppose, despite what we have said about the complexities of human behaviour, it does eventually transpire that somatic gene therapy could reduce the likelihood of someone being violently aggressive. What then? The simple answer is to throw one’s hands up in horror and agree that such ‘treatments’ should be outlawed. However, one problem with this response is that most countries already spend a lot of time and effort trying to get people who have been convicted of violent crimes to be less likely to commit these again. They may attend education programmes or receive state-funded psychotherapy, for instance, in attempts to achieve these aims.

This example highlights two related issues. The first is to do with the social construction of disease. It is easy to assume that diseases are fixed, objective realities. A different approach is to accept that a disease is, in a sense, a relationship a person has with society. Is being four foot tall a disease? The answer tells us more about a society than it does about an individual of this height.

Some conditions are relatively unproblematic in their definition as a disease. For instance, Lesch-Nyhan disease is characterised by severe mental retardation, uncontrolled movements and self-mutilation. No cure is at present available and the person dies, early in life, after what most people would consider an unpleasant existence. It is the existence of conditions such as this that have even led to claims in the courts of wrongful life or wrongful birth where a sufferer, or someone acting on their behalf, sues either their parent(s) or doctor(s) on the grounds that it would have been better for them never to have been born.

However, years of campaigning by activists for people with disabilities have shown us the extent to which many diseases or disabilities are as much a reflection of the society in which the person lives as they are the product of the genes and internal environment of that person.

The second issue is to do with consent. It is one thing for a person convicted of a violent crime to give their informed consent to receive psychotherapy or some other treatment aimed at changing their behaviour—though even these treatments are, of course, open to abuse. It would be quite another for a parent to decide, on a foetus’ or baby’s behalf, to let it receive somatic gene therapy to make it less aggressive.

In an attempt to set limits on the operation of somatic gene therapy, George Pazin, a member of the Orthodox Church and professor at the USA University of Pittsburgh School of Medicine, has argued: ‘I am all in favour of repairing God’s creation with the genetic tools that we have discovered, but I shudder to think of our trying to improve upon the creation.’

At the present time it may be difficult to be more precise than this. However, it is worth noting that several countries officially permit abortions only on health grounds yet, in practice, offer abortion on demand. By analogy, should the use of somatic gene therapy ever become widespread it may be difficult to prevent it being used for cosmetic purposes, in much the same way that plastic surgery can be used both for life-saving and for trivial purposes.

Indeed, the history of cosmetic surgery provides a valuable model for a possible future for gene therapy. While some types of cosmetic surgery seems not only ethically unproblematic but definitely desirable, much of it makes many people uncomfortable and some of it seems downright unacceptable.

Nor should cosmetic surgery be thought only to be the province of the Western rich. In many Asian countries, people save to have operations to make them appear more Western. Thousands of women in Korea have excruciatingly painful operations to remove muscle tissue from their legs to make them more slender—shades of The Life and Loves of A She Devil and GATTACA—while the first surgical operations in Japan to create a mimic of the Western eyelid were introduced by Mikamo-san in 1896.

Other examples of cosmetic surgery have been widely carried out to make people appear less Jewish, less likely to have suffered from syphilis, less Irish or more Aryan. This is not to mention the many millions of operations currently undertaken in an increasing number of countries to make people seem younger, slimmer or sexually more desirable. A significant proportion of these operations go wrong and I would like to see some quality data on their long-term effectiveness.

Even if they do prove ‘effective’, their widespread adoption raises ethical questions. For example, much orthodontic work, which I would classify as cosmetic, causes considerable discomfort to children below the age at which I suspect they are able fully to give informed consent and, arguably, leads to no overall increase in happiness in the world since any one person’s greater happiness at having more regular than average teeth may be counteracted by the increased unhappiness at those with more irregular than average teeth. Much cosmetic surgery may therefore operate within a zero-sum game, unlike, for example, education.

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The idea of genetic alterations to the human germ-line (so that succeeding generations are affected, rather than just the individual concerned) has been rejected by a number of religious writers and organisations, as it has by many secular writers and organisations. The main arguments against human germ-line therapy are that it is too risky, that it is unnecessary or that it is wrong.

However, others, including a number of distinguished moral philosophers and some theologians, have argued that the time may come when germ-line therapy is permissible, even highly desirable. Some people believe that time is fast approaching.

At the moment it is generally acknowledged that human germ-line therapy is too risky. Researchers cannot, at present, control precisely where new genes are inserted. This raises the not insignificant danger that the inserted gene might damage an existing gene, which could lead to diseases and other problems, including cancers.

Even if this problem gets solved, germ therapy may produce some surprising consequences. For example, there is some evidence that mice that are genetically quicker learners than other mice may be more sensitive to pain. To evolutionary biologists such trade-offs make sense. There are few free lunches in life. ‘Improving’ an organism in one direction may have unfavourable consequences in others.

However, although human germ-line therapy may currently be too risky, it is difficult to imagine that this will continue to be the case indefinitely. It seems likely that scientists will develop methods of targeting the insertion of new genes with sufficient precision to avoid the problems that presently attend such procedures.

Further, although germ-line therapy is typically assumed to be irreversible, it is more likely, if we ever get to the point where its use is routine, that it will normally be reversible. There is no reason to suppose that if something went wrong with the results of germ-line therapy, this wrong would necessarily be visited on a person's descendants in perpetuity. The same techniques that would permit targeted germ-line therapy should permit its reversal.

Is germ-line therapy unnecessary? It is no easy matter to demonstrate that something is ‘necessary’. Value judgements are involved, so that there may be genuine controversy about whether something is needed. Is the motor car necessary? Or elephants? Or wilderness? Or Vice-Chancellors?

It is likely that most improvements that might result from germ-line therapy could also be effected by somatic gene therapy or conventional medicine. Diabetes is a case in point. However, it may prove to be the case that germ-line therapy allows such conditions to be treated better. It is possible that germ-line therapy might be able to produce certain benefits that could not be realised by any other technique. No doubt the human race would be able to get on without germ-line therapy, and one may question whether it would do much to increase the sum of human happiness. Nevertheless, at some point it may convincingly be argued that germ-line therapy is necessary for some individuals.

Making the assumption, then, that one day germ-line therapy will both be relatively safe and deemed necessary, in the sense that it can bring benefits that other approaches can’t, is it right or is it wrong? Some people have expressed the fear that germ-line therapy might be used by dictators to produce only certain types of people. This objection may assume too much of genetic engineering. Dictators have far more effective ways of controlling people.

A more likely problem is that germ-line therapy will be permitted before people have grown sufficiently accustomed to the idea. The pace of technological change is so fast nowadays that some people end up feeling bewildered by new possibilities. It is worth recalling that people in many countries have grown comfortable with such practices as organ transplants and in vitro fertilisation, though such procedures gave rise in the aftermath of their initial development to very considerable ethical debate (not all of which, of course, has died away—in Japan transplants remain unacceptable as in vitro fertilisation is to many Roman Catholics). Similarly, perhaps human germ-line therapy will become broadly acceptable. The theologian, Ian Barbour, has argued that it is important that sufficient time is allowed before germ-line therapy on humans is permitted, both to ascertain, so far as is possible, that the procedure is safe and so that people may feel comfortable with the idea.

A frequently expressed worry about germ-line therapy is the extent to which future generations will be affected. Again, it is possible that this fear may be an exaggerated one. As we have said, we can overestimate the importance of our genetic make-up. Then there is the point that people already have and will continue to have a tremendous influence over future generations through everything from childrearing patterns and family planning to books and pollution.

There remains the worry, though, born of long experience with slippery slopes, that the road to hell is paved with good intentions. Despite the difficulties of distinguishing in all cases between genetic engineering to correct faults (such as cystic fibrosis, haemophilia or cancers) and genetic engineering to enhance traits (such as intelligence, creativity, athletic prowess or musical ability), the best way forward may be to ban germ-line therapy intended only to enhance traits even if it proves to be safe, at least until many years of informed debate have taken place.

The idea that it is useful to distinguish between genetic engineering to treat disease and genetic engineering to enhance traits appeals to some theologians who have argued that genetic engineering to treat disease may be seen as part of the redemptive activity of humans. At the same time, it is worth noting the words of J. Robert Nelson, senior research fellow of The Institute of Religion, Texas Medical Centre and adjunct professor of medical ethics at Baylor College of Medicine: ‘The prospect of overcoming and even eliminating from the germ-line certain types of human suffering is, like all other eschatologies, both appealing and frightening’.

Nor is it only religious leaders who have warned of the dangers of presuming to improve human nature or enhance human capabilities. Jonathan Glover quotes the philosopher John Mackie who once argued, against Glover's optimism about germ-line therapy, that ‘if the Victorians had been able to use genetic engineering, they would have aimed to make us more pious and patriotic’.

Finally, it might be the case that genetic engineering would require parents to choose which traits they would like enhanced in their children. It may, for example, prove impossible simultaneously to enhance a child's ability to learn mathematics, paint, show great empathy and play a musical instrument. It can be argued that genetic engineering to enhance human traits might diminish the autonomy of the genetically engineered child that results.

Nevertheless, suppose that one day it really does become possible safely to improve everyone's IQ by some 20 to 40 points through germ-line modification. Imagine further that this procedure especially benefits those who would otherwise have an IQ of below 100 (in other words, it decreases the variance in IQ scores rather than increasing it) and that the procedure can be carried out much more effectively and cheaply than via other routes (e.g. somatic gene modification, psychosurgery or extra education). It could be that it would prove difficult to argue that such a procedure should be made illegal. Indeed, I suspect that it is more likely that we would be discussing whether it should (like education in general) be mandatory or (like school education, as opposed to education at home) be optional.

© Guild of St Raphael