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Playing God: The Ethics of Designer Babies

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About The Author

Ceylan Simsek (Regular Writer)

Ceylan Simsek is a law school graduate whose main area of interest is medical law and international law. Alongside her studies, she has obtained certifications from Stanford University School of Medicine on overprescription of antibiotics and unconscious bias in medicine. She works at Medical Protection Society, the world's leading medical defence organisation for medical, dental and healthcare professionals. Outside of law, she enjoys learning new languages and, in order to combat her fear of heights, rock climbing.

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Genome editing is editing society.

Annelien Bredenoord

Early last year, scientists at Francis Crick Institute - a biomedical research centre in London - led one of the world's first DNA edits in human embryos. This was conducted by using Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR-Cas-9) technology, which uses a ‘snipping’ technique to edit DNA. Though Kathy Niakan, who led the research, was responsible for a historic moment for Britain, she was not the first to conduct this kind of experiment: as the Wall Street Journal reported in January 2018, scientists in China have used similar technology to treat 86 cancer and HIV patients.  

However, many scientists are concerned about the unwanted mutations or potentially lifelong defects these treatments could result in. The key concern for the law is whether it is able to keep up with such developments in science and medicine. This article will consider the legal, ethical and practical challenges that will be faced by the UK in relation to this relatively new technique of DNA editing.

How the Science Works

CRISPR-Cas-9 essentially enables scientists to ‘snip’ fragments of DNA or to remove any unwanted genetic sequencessuch as inheritable diseases, from an individuals DNA. Once the fragments of the DNA have been snipped off’, the cells in-built repair mechanisms act to repair the damage. In fact, during this process, new sequences can be incorporated into the DNA.

This gene editing technology can even be used in conjunction with IVF in a way that facilitates the editing of the human germline. It has therefore been described in critical terms by some as opening the door for the creation of 'designer babies'. There is, however, a difference between using this technology to edit non-reproductive and to edit reproductive cells. As Dr. Yalda Jamshidi, Senior Lecturer in Human Genetics at St. Georges University Hospital Foundation Trust has stated:

Techniques to correct defective genes in 'non-reproductive' cells are already at various stages of clinical development and promise to be a powerful approach for many human diseases which don't yet have an effective treatment. However, altering genes in human embryos can have unpredictable effects on future generations.

Definitions

  • Gene therapy: the introduction of normal genes into cells in place of missing or defective ones in order to correct genetic disorders.
  • Somatic gene therapy: transfer of the genes into the somatic cells of the patient, such as cells of the bone marrow.
  • Germline therapy: DNA is transferred into the reproductive cells such as eggs or sperm.
  • Genetic modification: Direct manipulation of the organism’s genome using biotechnology.
  • Mitochondrial donation: Special form of in vitro fertilisation in which the baby’s mitochondrial DNA comes from a third party. It is used to prevent the transmission of mitochondrial disease from mother to the child.
  • CRISPR Cas 9: Genetic editing tool that can act as scissors to “snip off” fragments of DNA.
  • Cancer therapy: Radiation, chemical or biological therapy to potentially cure cancer.

The Current Legal Approach

At present, there are two types of gene therapy: (1) somatic and (2) germline. Somatic gene therapy is the transfer of the genes into the somatic cells of the patient, such as cells of the bone marrow. For this reason, the new DNA does not enter the eggs or sperm. Germline therapy is where the DNA is transferred into the cells that produce reproductive cells, eggs or sperm, in the body.

Though the UK law currently allows somatic cell gene therapy, which is not inherited by an offspring, it is subject to onerous conditions: it requires ethical approval, licensing of clinical trials by the Medicines and Healthcare Products Regulatory Authority and market authorisation from the European Medicines Agency.

However, English law prohibits the alteration of an embryo in any way. The exception to this is mitochondrial donation, as governed by the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 (HFER 2015). Under the HFER 2015, mitochondrial donation techniques do not constitute genetic modification. The reason for this is a simple one: mitochondrial DNA is only inherited from the mother, whereas nuclear DNA (which is prohibited under the current law to prevent genetic editing) is inherited from both parents.

Furthermore, Section 3ZA(1)(b) of the Human Fertilisation and Embryology Act 1990 (HFEA 1990) sets out the definition of gametes and embryos that can be used in IVF: those 'whose nuclear or mitochondrial DNA has not been altered'. When interpreting this section in light of the HFER 2015, it seems absurd that - given the UK was the first country to allow germline modification through mitochondrial replacement - the government will eventually refuse to permit gene editing when safe use is demonstrated. Such a refusal could result in the UK falling behind other nations like China that are also pioneering this new technology.

Somatic therapies, where the cells are removed from a patient and edited in a lab, are regulated by the HTA and are currently used for treatments such as HIV, hemophilia and cancer therapy. By contrast, the CRISPR/Cas9 technology requires germline editing which is inheritable by an offspring and currently prohibited by UK law. In their article UK legislation and regulation governing the use of gene editing the Wellcome Trust writes that the Human Fertilisation and Embryology Authority, which regulates the editing of human eggs and sperms including up to 14 days old, permits research but with the current legislation will be insufficient for the CRISPR Cas9 technology.

As Professor Shirley Hodgson, Professor of Cancer Genetics at St George's University of London, stated: 

Any proposal to do germline genetic manipulation should be very carefully considered by international regulatory bodies before it should be considered as a serious research prospect. This is because of the obvious concerns about the heritability of the genetic alterations induced, and the way in which such research could spread from work on "non-viable" embryos, to work on viable ones once this type of research had been accepted in principle by international regulatory bodies.

Genetic modification of Cas-9 can be used to treat disease but also to ensure a child has certain coloured eyes; this may interfere with Article 3 of European Convention of Human Rights (ECHR) which prohibits torture, and inhuman or degrading treatment or punishment”. In light of this, a child being subjected to overly ambitious procedures (such as Cas-9 to ensure a certain appearance rather than treating a disease) and who are left with a lifelong disability could directly invoke this right (against the State who endorses such practices).

However, the introduction of genetic editing is ultimately discriminatory against those individuals with genetic characteristics that may not necessarily be life threatening – for example, individuals with particular characteristics (a particular skin colour, to take a simple example). Article 6 of the Universal Declaration of Human Genome and Human Rights (UDHGHR) states:

No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.

This directly relates to Article 14 of the ECHR which states that any person is entitled to equality no matter their sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.

The technology proves necessary for treating other types of illnesses such as cystic fibrosis, polycystic kidney disease, and Tay-Sachs disease.  At the same time, as mentioned, it may also be possible to edit out the eye colour, hair colour or skin colour of your baby; by doing so you would essentially be discriminating based on genetic characteristics, as well as infringing the human rights of the baby who cannot yet make decisions based on their own free will. Scientists in China (a country with unregulated clinics) and the US have already attempted to use this technology to create what are essentially designer babiesp>

Ethical and religious considerations

As with many medical advancements there is the possibility of conflict with religious beliefs. The ability to genetically edit a germline cell could be seen as interfering with Gods will. A principle that underpins many religions is unconditional love parents must have towards their children and the acceptance of God's will as one’s own. For example in the Bible, Romans 12:10 and 1 Peter 2:17 states To love unconditionally, we obey Gods command to put on love or respect despite the circumstances(Romans 12:10; 1 Peter 2:17).  In addition, Mother Angelica - a prominent Catholic figure - stated in her book (Mother Angelica's Answers, Not Promises by Mother M. Angelica, Christine Allison”); When you accept God's will in every aspect of your life you will find God providing you with strength, courage, and a dignity that resounds to the heavens.

As a result of these beliefs, introducing gene editing could ultimately lead to rejection of genetic alterations by religious communities; possibly leading to a public disapproval with the status quo or government, as they would be allowing scientists to "play God”.

There is also the moral issue of how future offspring are viewed. As discussed previously, the ability to edit genetic material can lead to the development of designer babies. It would technically be possible for a parent/s to decide that their child is to have a certain eye colour, hair colour, skin colour etc. This may impact family dynamics and the way society views the relationship between child and parent as children could potentially be seen as a product, like a doll, rather than an autonomous human who should be cared for.

Crucially though, with gene editing there a clear line between using it for advancement of humanity and using it as relief from physical suffering of a future offspring. For example, through gene editing it could be possible to introduce neuro-enhancements to improve memory recall, or to improve the skeletal-muscular frame for better athletic performance. Currently, the World Anti-Doping Agency (WADA) bans non therapeutic forms of genetic manipulation for enhancement in sports. Gene therapy or gene dopingin sports is considered largely to be unethical and risky for the athlete. For example, using substances for human enhancement was met with major public disapproval in the BALCO scandal which involved athletes and chemists using undetectable doping substances. This is in part because that use of substances to improve ones natural capability can be seen as unfair and going against the spirit of the sport. There is some thought that gene dopingwould be on a similar level as chemical doping as illustrated by WADAs ban on gene doping. It is therefore likely that such a ban would be expanded to athletes who have had genetic editing to improve their physical capabilities. This also has implication as to what degree of genetic editing would be tested for (for example distinguishing between an athlete who had genetic editing to treat a disease and one who had it done to improve their capabilities). As previously discussed there are also the ethical implications of a parent who attempts to have a designer babywith the plan that the child would become a professional athlete, once again leading to the child being seen as a product rather than a human being.

There is also the risk that the future offspring whose parents - for whatever reason (financial, thought risk too high, religion, etc.) - did not have the augmentation done may become ill or isolated in society. In addition, these enhancements may not be subsidised by the NHS, which is routinely subjected to financial pressure. Ultimately, if private hospitals were to adopt this technology it could lead to a genetic and social gulf between people. 

Furthermore, down the line there is also the fear that this augmentation would not be used only to cure illness but to also try and eradicate certain individuals such as those belong to certain ethno-religious groups like Judaism, homosexuality, transgendered, LGBTQ+. For example, in China, they have introduced conversion therapyto change the sexual orientation of individuals. With gene editing, this could ultimately lead to devastating consequences for vulnerable groups in society. It is difficult not to see the potential for a society to implement laws and use of genetic editing to disastrous effects. At the same time gene editing can be used to treat diseases that currently have no cure or whose treatment would also pose serious risks.

Conclusion

The issues created by the potential for DNA modification creates a moral maze similar to with any other scientific development that can interfere with what it means to be human. The question which arises in such situations is not life or death, but rather: what kind of life is worth living?For somebody suffering from a genetic disease, this could serve as an escape for their future offspring. On the one hand germline editing could potentially ease one's quality of life but on the other hand, it can also leave a human being subjected to an over ambitious procedure with the consequences of possible lifelong defects.

In addition to ethical considerations, there are also financial considerations: these enhancements may not be subsidised by the NHS, which is routinely subjected to financial pressure. Ultimately, if private hospitals were to adopt this technology it could lead to a genetic and social gap between those who are able to afford this treatment and those who may not be able to. Instead of germline editing, the success of which is yet to be proved, it is a much more sensible idea at this point in time to focus on research into genetic diseases in order to find solutions, rather than risking a certain therapy which could ultimately be inherited by future generations. For this reason, gene editing should only be allowed once definitive results as to the success of it can be proven and it should be strictly restricted to health related issues rather than creating designer babies for the few who can afford to subsidise such treatment.

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Tagged: Medical Law & Ethics

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