The University of Southampton

The ethics of genetic engineering

On the 26th of July 1978, Louise Joy Brown, the first test tube baby was born. Nearly 50 years on, are we any closer to editing our imperfections and what are the implications?

What is genetic engineering?

Genetic engineering is the process of modifying an organisms DNA. Aside from helping couples who are otherwise unable to have babies, recent advancements in the field ranges from the eradication of malaria to the production of synthetic human insulin to reducing the risk of genetic diseases. The benefits of genetic engineering also extends beyond humans, with the development food crops that are resistant to extreme weather, ecological and soil conditions. An example of the technology used is Crispr CAS (Clustered Regularly Interspaced Palindromic Repeats), which edits an organisms genome by removing/adding/modifying DNA. The first babies born using Crispr CAS9 edited genes was born on 25th November 2018, suggesting we are getting closer to editing our imperfections.

The ethics debate

However, despite these benefits, the question remains: Is it ethical? Indeed, these technologies are beneficial to couples who are otherwise unable to have children, however, there is potential for this technology to be misused. The ability to select for certain genes has given rise to “designer babies” where features of interest can be selected for with other undesirable features selected against. While this can be beneficial in selecting against genes susceptible to disease, the fact remains that there are multiple ethical issues?

One major issue is the potential to increase social inequality. Due to the financial cost only the rich can afford this technology, increasing the gap between those who can afford it and those cannot. Further, we may also be creating a society where certain traits are seen as more desirable, resulting in discrimination towards those without the preferred features, aswell as a loss of diversity. Another concern is the issue autonomy and informed consent as it is the embryos that are being modified, questioning whether the parents have the right to make life changing decisions of their future children, especially if they are non-medical. Further, the long term consequences are largely unknown and could have side effects in the individual and future generations.

Conclusion

The ethics of genetic engineering are complex. Indeed, the possibility of advancement and improvement to health are massive, but the side effects and potential misuse is equally big and must be considered. Nevertheless, it is important that there is a balance between allowing for innovation and protecting human right.

Links

Guardian Research Department (2011). 1978: The First Test Tube Baby. The Guardian. [online] 2 Jun. Available at: https://www.theguardian.com/theguardian/from-the-archive-blog/2011/jun/02/guardian190-test-tube-baby-1978 [Accessed 1 Mar. 2024].

Mirage News (2023). Designer Babies & Ethics of Human Genetic Engineering. [online] Mirage News. Available at: https://www.miragenews.com/designer-babies-ethics-of-human-genetic-992678/ [Accessed 1 Mar. 2024].

Rose, B.I. and Brown, S. (2019). Genetically Modified Babies and a First Application of Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR-Cas9). Obstetrics & Gynecology, [online] 134(1), p.1. doi:https://doi.org/10.1097/aog.0000000000003327.

New Stealthy Stem Cells?

Developments in new gene editing techniques provides stem cells with the ability to bypass the immune system offering new applications in cell replacement therapy.

There are more than 10 million people worldwide currently living with Parkinson’s disease and 3 million people recorded to be living with type 1 diabetes globally in 2017. Both of these chronic diseases are currently incurable and require regular medication and treatment to control. Due to their life-long impacts, many people can relate to the implications these diseases have on both the individuals diagnosed and the family members or friends of the individuals. The negative effects can be physical, mental, social or financial and often a collection of them all.

So if there was a possible solution would you take it?

Research has suggested a new strategy that could provide an endless supply of replacement body parts for individuals suffering from debilitating disorders and diseases. Scientists can now grow stem cells in the laboratory and engineer them into specialised cell types. Which can eventually be transplanted into humans and potentially cure diseases, once believed to be incurable. For Parkinson’s disease this could mean cultivating neurones to combat the progressive damage made by the disease over the years to different parts of the brain, or for type 1 diabetes insulin-producing pancreatic cells could completely reverse the effects of the disease and lastly heart muscle cells to could be transplanted to enhance cardiac function. These are just a few examples of the life-changing effects this new treatment could have.

In genetically modified mice predisposed to autoimmune diabetes, pancreatic cells undergo infiltration and destruction by “killer” T-cells, leading to a decline in insulin production (pictured on the left). However, administration of MOTS-c injections mitigated T-cell infiltration, consequently averting disease onset (pictured on the right).

Credit: Newcomb (2021)

How this is possible

Utilising gene-editing techniques like CRISPR-Cas systems, stem cells can be manipulated to possess immune-evading traits, effectively bypassing recognition mechanisms. Moreover, these engineered cells can integrate fail-safe features to guarantee cells can be eliminated in the case of unforeseen issues. Consequently, such ‘stealth’ cells hold promise to support various cell-replacement therapies.
In most cases, the process starts with the disruption of at least one component of the cell’s major histocompatibility complex (MHC). This complex functions like a molecular identity card, showcasing distinct cellular information fragments that inform the immune system’s T lymphocytes, its frontline defenders, and whether the cell is hostile.
To mitigate potential susceptibility to natural killer cells (NK), certain researchers have suggested the reintroduction of genes encoding particular MHC antigens. These antigens enable the cell to modulate NK cells without eliciting T-cell responses that may induce apoptosis (cell death). NK cells serve as the effector lymphocytes of the innate immune system, tasked with regulating various tumour types and microbial infections to restrict their dissemination and consequent tissue harm. Alternatively, other strategies may involve introducing genes that produce ‘checkpoint’ proteins, specialised molecules aimed at directly suppressing NK cell activity.

Are there any downfalls to this ground-breaking new strategy?

Unfortunately, therapies stemming from stem cells require customisation for each patient, a process that is both time-consuming and costly. Alternatively, these treatments can utilise donor cells; however, due to the tendency of the immune system to reject foreign cells, such ‘allogeneic’ therapies require the administration of immune-suppressing medications alongside treatment. However, this approach escalates the risk of complications like infection and cancer.

Ultimately, the optimal safety strategy, as well as the ideal extent of gene editing required to suppress immune responses, may vary depending on the disease. For instance, pre-made cell therapy for cancer may not require the same design features as one tailored for diabetes, given the differences in the immune system’s response and the distinct risk-benefit considerations for each ailment. In essence, there is no ‘one-size-fits-all’ solution.

With the true test of human trials likely to follow soon the future of this treatment is looking hopeful.

Acknowledgements:

Dolgin, E. (2024). Stealthy Stem Cells to Treat Disease. Nature. [online] doi:https://doi.org/10.1038/d41586-024-00590-y.

Green, A. (2008). Descriptive Epidemiology of Type 1 Diabetes in Youth: Incidence, Mortality, Prevalence, and Secular Trends. Endocrine Research, 33(1-2), pp.1–15. doi:https://doi.org/10.1080/07435800802079924.

Newcomb, B. (2021). Small Protein Protects Pancreatic Cells in Model of Type 1 Diabetes. [online] USC Leonard Davis School of Gerontology. Available at: https://gero.usc.edu/2021/08/12/mots-c-mitochondria-type-1-diabetes/ [Accessed 5 Mar. 2024].

Parkinson’s Foundation (2024). Statistics | Parkinson’s Foundation. [online] www.parkinson.org. Available at: https://www.parkinson.org/understanding-parkinsons/statistics#:~:text=Parkinson.

Vivier, E., Tomasello, E., Baratin, M., Walzer, T. and Ugolini, S. (2008). Functions of Natural Killer Cells. Nature Immunology, 9(5), pp.503–510. doi:https://doi.org/10.1038/ni1582.

Where do cochlear implants fit in Deaf culture? 

After watching the film ‘The Sound of Metal’, I realised that my previous perceptions of hearing loss didn’t consider the personal nuances and complexities that are integral to the Deaf community. The film follows a drummer who suddenly loses hearing in both ears. It is a highly personal portrayal of the different perspectives on hearing loss and the difficulties of adjusting to cochlear implants. What struck me the most (spoiler alert!) was the main character’s initial disappointment when getting fitted with a CI and the reaction of the deaf community he lived with to his decision. Following a fascinating lecture from Nicci Campbell, I decided to explore the perceptions of cochlear implants within Deaf culture further. 

What Are Cochlear Implants? 

Diagram of an in-situ cochlear implant. (NIDCD, Cochlear Implants).

Cochlear implants are small electronic devices that aid hearing acquisition and sense of sound in profoundly deaf or hard of hearing individuals (NIDCD). The instrument picks up sound through the microphone. Sound is then arranged by a speech processor and transmitted as an electrical signal to the electrode array, which sends the electrical impulses to various regions of the auditory nerve (NIDCD).

Concerningly socioeconomic status can influence outcomes of cochlear implant surgery, particularly in children (Sharma et al., 2020). I was unpleasantly surprised to learn that adults are only entitled to one CI on the NHS. It seems that whilst just one CI may provide sufficient access to auditory stimulation, this could intensify the socioeconomic divide in treatment for hearing loss and may prevent a significant increase in quality of life of individuals who can’t afford a second implant. One reality star, Daisy Kent, spoke about her hearing loss and stated that since she had the implant she doesn’t have ringing in her left ear, but “in my right ear, I have a ton of ringing”. I think this helps illustrate how only having one CI can prevent a much more desirable outcome for those who can’t afford two. 

Deaf Culture 

Prior to watching ‘The sound of metal’, I perhaps wouldn’t have considered that cochlear implants could be such a controversial topic. However it is clear that individual perspectives, particularly within the Deaf community, vary quite dramatically (Li et al., 2024). In the film, the main character joins a deaf school, and is told to leave once he secretly pays for cochlear implant surgery.

Some members of the deaf community see CI as a threat to Deaf culture. I think this highlights the rich history of communication and adaptations of people with hearing loss. To understand this further I have included a brilliant Ted Talk by Glenna Cooper.

I particularly enjoyed her statement that deaf people tend to have a much greater appreciation for the exchange of information, and I think this enhances her point that deaf people should not be considered as disabled, rather that they “have a different language”.  

You can read more about Deaf culture here.  

A Middle Ground

Sign language is perhaps the most obvious facet of Deaf culture. However, I was horrified to learn that not too long-ago many doctors told parents to discourage their deaf children from signing – and this is just one of the reasons why I can appreciate the sensitivity of assuming all deaf people may benefit from auditory aids, which may lead to a decline in the use of sign language. However, it is important to appreciate experiences where cochlear implants have created a unique path between both ways of life – Heather Artinian, a lawyer who was born deaf and to deaf parents, decided to get a cochlear implant surgery at age 10, against her parents initial wishes. She describes how she operates in the ‘Heather world’ where her upbringing amongst a deaf community, and her implant, allows her to enjoy aspects of both the hearing and the deaf world. I would highly encourage listening to her engaging and positive perspective on being in ‘not the hearing or deaf world.’ https://youtu.be/jhm5OaXJVMQ?si=TU_DSGcD-m-fEeqq

In an ideal world, we would all be more accommodating of Deaf culture, and more people would aim to learn sign language.  

You can follow this link to find out how to start learning sign language. You can also learn how to sign your own name, and other words here.

 

Celebrating diversity and appreciating different ways of experiencing the world enhances new perspectives and solutions of healthcare. Following utilitarian beliefs that aim to serve the majority threatens minority cultures, such as Deaf culture, which could be excluded when attempting to ‘fix’ what many people consider a significant part of their identity. I believe that whilst the development of CI has provided many people with access to a better quality of life, reduced social isolation and discomfort, we shouldn’t immediately assume that anatomical differences need to be universally ‘fixed’, rather than accommodated and respected, whether that be through learning BSL or providing equitable access to assisted hearing technology.

Links

NIDCD https://www.nidcd.nih.gov/health/cochlear-implants#:~:text=A%20cochlear%20implant%20is%20a,the%20skin%20(see%20figure).

Sharma et al (2020) https://doi.org/10.1016/j.ijporl.2020.109984

Li et al (2024) https://doi.org/10.1038/s41598-024-55006-8

The Aesthetics of Prosthetics

When designing prosthetics, it is evident that the most important consideration is their function. After all, what use is a prosthetic leg if it cannot be walked on? Other considerations, such as comfort, lifespan, and the impact of use on the rest of the body, are also included, but one factor is often left out of the conversation: visual appeal. It goes without saying that a primitive peg leg lacks the full range of function and motion of the human leg, and thus, over the past several hundred years, the function of the prosthetic leg has been developed to not only work more like the lost limb but in many ways look like the lost limb. However, some people note that more recently increasing the functionality has lessened the visual relationship of prosthetics and the human body. In some ways this feels like a regression in progress: historians and prosthetis specialists are unsure if archaeologically recovered early prosthetics, such as the Egyptian Toe, were primarily designed for function or appearance.

Image of prosthetics from the past 100 years from Caulfield Hospital in Melbourne.

When a person loses a limb, not only their physical health is altered, but a patient’s mental health undeniably takes a toll. Feelings of depression, anxiety and low self-esteem in regards to body image are often experienced by amputees, and these are feelings that can be exacerbated with time; in a study of 207 lower-limb amputation patients, patients who had been amputated 4-6 years ago had the lowest body satisfaction. There are distinct feelings of loss of independence and bodily autonomy, as well as the aforementioned poor body image, which contribute to this. Feeling ‘other’ is common among those with physical disabilities as a result of self-sourced insecurity and insecurity due to social exclusion and discrimination. Many efforts are made in the post-operation treatment of patients to rehabilitate them both physically and mentally by psychologists, physiotherapists and occupational therapists, but often these negative self-perceptions persist.

These negative self-perceptions may go beyond the general physical insecurities and contribute to fashion insecurities. Social pressure to fit in is worse than ever with the dissection of fashion trend cycles into microtrends and the rise of social media. Trying to conform a part of you that does not fit society’s idea of ‘perfect’ into trends that demand perfection can feel demoralising and therefore trying to adapt your prosthetic to your own journey of experimentation with fashion can be a frustrating experience. These sentiments were echoed by Chinese fashion model Xiao Yang, who has worn a prosthetic leg for over 25 years and is one of several in the fashion and art industries who have ventured to add individuality and personality to prosthetics by using accessories such as patterned leg covers or shaped knee caps, developed in collaboration with jewellery brand YVMIN.

Xiao Yang wearing a prosthetic cover from her collaboration with YVMIN.

Though Yang’s collaboration with the YVMIN was temporary and specifically for Yang, another company, Alleles Design, had a similar concept and continues to provide custom-manufactured prosthetic covers with thousands of possible designs with the aim of ‘giving the power of self-expression back to [prosthetic wearers]’. You can even design your own using their design tool.

Demonstration video from Alleles Design LTD

With companies aiming to fill this gap in the market, personalised prosthetics are likely to become more common as knowledge of these accessories grows and the costs decrease. Personalised prosthetics have the potential to reduce body image and self-esteem issues amongst limb-prosthetic users and are a step towards prosthetics that feel more like man than machine.

Daydream Hour

The idea of bio-mechanical technologies has always fascinated me ever since I was young. Good old cyborgs and humanoid robots we always see in fictions was the starting point for my interest in engineering.

That was my childhood daydream, making robot and prosthetics. After a while, this field seems a bit too big for my ability. But after finding this youtube video, It gave me another spark to tackle it again.

Neuralink – Should we be skeptical?

I recently read that Elon Musk has made grand advancements in his neurotechnological company ‘Neuralink’. It is a revolutionary invention especially since Neuralink have recently been successful in implanting their first brain chip in a human. He claimed that the first Neuralink product ‘telepathy’ enables control of their devices just by thinking.

However, we only have Elon Musk’s word to take for it as Neuralink are yet to make an official statement regarding the operation. Despite claiming that the patient was recovering well, there are fears from neurologists that the procedure may cause inflammation and bleeding to tissues. Although it may not be a completely untested technology, there are always risks to brain surgeries so they must be carried out with caution. So the question arises: is Neuralink advancing too fast and should they pay more attention the possible side effects of implanting?

Neuralink- Is it a genius invention?

Recently, I stumbled across a new idea, or shall I say, a new invention from none other than Elon Musk. As we all know, Musk has been at the forefront of revolutionising the technological world with his ideas and innovations, culminating in his successes achieved with Tesla and SpaceX. So it comes as no surprise that he’s back with another idea, but this time involving the human brain. This new innovation is called Neuralink. You may be curious to know what it actually is. Neualink is Musk’s new neurotechnology company which aims to create generalised computer interfaces which can be implanted into the brain to be able to unlock the human potential and restore autonomy by enabling wireless communication across the world. Now this sounds quite innovative and would definitely change the landscape of the world, but is there more to this that we should be skeptical about?

Neuralink

Today I came across the concept of Neuralink. You may wonder what it is, just as I did. Neuralink is an implant designed by Elon Musk to be inserted into the brain of patients with quadriplegia. His aim is for people with quadriplegia to be able to control their phones by using their brain with no movement required! I think that sounds amazing! But is it too good to be true?

After conducting my own research through literature, I found that there has been many controversies associated with this venture. There have been rumours that the testing has resulted in animals/ monkeys have been left with debilitating after effects. Elon did combat this by stating that no animal has been harmed in the process of testing the product – all of which is still being investigated.

Neuralink – Is it the next step for humanity?

It is not surprising that Elon Musk is now at the forefront of implementing computer interfaces in the human brain. His recent successes with Tesla and Space X has revolutionised technology and he continues to innovate now with the ‘goal to restore autonomy to those with unmet medical needs’ , but more importantly he aims to unlock human potential.

What is neuralink?

Founded in 2016 by Elon Musk and Jared Birchall , Musk has stated that neuralink is an implant in the human skull and will essentially work symbiotically with the brain connecting the user to the internet allowing control over different technologies.

Can humans regrow limbs?

Stem cells have played a key role in regenerative medicine since their introduction in 1958. They’ve been irreplaceable in their clinical applications, including treatment of skin burns, reproductive disorders and pulmonary dysfunctions, and have great potential for treating currently untreatable conditions and growing organs for transplants. But my question is whether they will ever have the potential to regrow entire limbs?

I appreciate this is a significant leap from e.g. a liver regrowing after donation for a transplant (which really is just tissue hyperplasia), but what makes us so different from creatures such as the axolotl that are capable of regrowing entire limbs?

I found an article that has provided some insight into why this simply isn’t possible in humans. 🙁