The creation of DNA scissors to alter genes and maybe result in the creation of ‘designer babies’?

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The Cas9 complex depicts the Cas9 protein (in light blue), along with its guide RNA (yellow), and target DNA (red).
Image from Bloomberg.com

As we have been discussing, genetic engineering and the manipulation of traits to create genetically modified offspring is undoubtedly one of the most exciting progressions in the modern day science and medical fields.

Scientists seem to have found DNA scissors that can adapt to edit genetic material and potentially remove disease causing genes and add in ‘healthy’ DNA strings in place of them. The development of efficient and reliable ways to make precise, targeted changes to the genome of living cells is a long-standing goal for bio-medical researchers. This ‘scissors’ is known as CRISPR-Cas9 protein in the science world. This may eventually be able to treat or avoid diseases such as cancers, muscular dystrophy, and HIV/AIDS by editing the genetic coding which gives the specific person this illness. CRISPRs can add and delete base pairs at specifically targeted DNA loci which can result in genetically engineering a cell in a favourable way.

CRISPRs have been used to cut as many as five genes at once.This new approach will hopefully result in being able to ‘snip’ viruses from human cells. Ever since genome sequencers were produced DNA has been readable in a similar way to that of credit cards or any other code. The evolution of DNA reading was similar to that the CD ROM in the 90’s. Initially CD ROM’s were read only and no editing could occur then the CD was eventually made to be editable. This evolution timeframe is similar to that of DNA and it is expected that DNA will become editable and eventually customisable. This customisation may eventually go beyond curing diseases and may evolve to the production of ‘designer babies’ which has been discussed at great length in the previous posts.

References; http://www.bloomberg.com/news/articles/2015-03-19/scientists-have-dna-scissors-to-snip-out-your-genes-but-should-they- https://www.neb.com/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology http://www.sciencemag.org/content/341/6148/833 http://www.nature.com/news/scientists-sound-alarm-over-dna-editing-of-human-embryos-1.17110 http://www.nature.com/news/scientists-sound-alarm-over-dna-editing-of-human-embryos-1.17110 http://www.nature.com/news/scientists-sound-alarm-over-dna-editing-of-human-embryos-1.17110

Gene Therapy: An ethical and practical view

In this post I will continue on from our previous discussion about Gene Therapy and talk about the ethical and practical issues surrounding it. The question of whether a foetus has the right to be born unmodified or instead have the right to be born free from preventable disease and enhanced personal characteristics is right at the heart of the debate. Although most gene therapy techniques are still in their infancy, advancements are constantly being made with treatments now legal in China and Germany (with the first European commercial procedures anticipated this year), we can expect to see more and more developments and investment in the industry with US companies alone raising over $600 million in 2013-2014 to push the technology to the next level.

With regard to the foetus and disease prevention prior to birth there are various ethical issues that need to be addressed for the treatments to be accepted. Strict regulation will be necessary in order to ensure that the procedure is carried out correctly so child’s health does not suffer any negative side-effects, for introducing the new cells to the embryo improperly could be detrimental to their life. For genetic engineering to become common in society, further tests and studies will be required to ensure that years down the line, the subjects remain healthy. Although we all dream of life without illness and disease, even people in favour of the advancements of gene therapy are growing increasingly concerned that the initial studies and excitement led to a premature rush of approved gene therapy experiments (Gorman 1995).

The implementation of such therapies in my opinion should either be totally banned or be available as a standard procedure to all, irrespective of income, particularly when it comes to “designing” a baby’s genes. If the technology were to become available in the future it will more than likely come at a price only affordable to the wealthy (upon initial availability anyway). I think it goes without saying that all parents, regardless of their financial position, want every chance of success and superiority for their child. By enabling parents to alter the genetic makeup of a foetus to change their appearance, personality or physical capabilities, does society not run the risk of creating another race or species? After all, it is our genetic makeup that distinguishes humans from animals. This is not to say that they will look entirely different to unmodified humans but if the procedure were only accessible to a small portion of society, those unable to afford it will be left at even more of a disadvantage and risk becoming alienated.

In the early stages of testing, some trialists in the US came down with cancer due to the cells that were added as side-effect of the procedure. This forced the FDA to call a halt to a lot of the studies that were being undertaken. With less regulation in China, scientists began trying different methods and in 2003 SiBiono GeneTech Co became the first gene therapy company to offer a method of combatting cancerous cells. The procedure costs about $20,000 per two month course, obviously the amount of courses required is dependent on the client’s condition. Although this would not be completely out of reach for people it is important to note that when it comes to saving one’s own life, there is no price that than be put on that which plays into the hands of these firms who are driven by profit. Would it even be possible to make this process widely available before birth due to the cost of research and development of the technology? And what would the incentive for large firms such as SiBiono be to pour billions into a technology that would be given for free?

If gene therapy were to be adopted by society strictly for medical use and not for beauty or appearance where is the line drawn between what is a genetic disorder and a trait? For example if parents realised prior to the birth of their child that it would be born with a form of dwarfism, would it be considered ethical to treat them with gene therapy? On the other hand if someone were to be born short in height would it be considered ethical to treat them with gene therapy? In the broad scheme of things, would it be considered ethical to stop developing a technology that has so much potential despite the implications it brings with it? These are questions I’m sure will be answered in the years to come when the scientific knowledge has advanced further.

 

 

References;

Ndsu.edu, (2015). The Ethics of Gene Therapy. Available: http://www.ndsu.edu/pubweb/~mcclean/plsc431/students/bergeson.htm Last accessed 15th March 2015.

Businessweek.com, (2006). A Cancer Treatment You Can’t Get Here. Available: http://www.bloomberg.com/bw/stories/2006-03-05/a-cancer-treatment-you-cant-get-here Last accessed 16th March 2015.

Reuters, (2015). Exclusive: First gene therapy drug sets million-euro price record. Available: http://www.reuters.com/article/2014/11/26/us-health-genetherapy-price-idUSKCN0JA1TP20141126 Last accessed 16th March 2015

Is Genetic Engineering of ‘designer babies’ just a modern form of the ancient practice of Eugenics?

Simply put Eugenics is trying to control the outcome of the development of offspring through the reproduction of people with desirable traits. So if you want a tall child you have a much better chance of having a tall child if you reproduce with a tall person. When trying to maximise desirable traits it is called positive eugenics and when trying to limit less desirable traits i.e. illnesses, disabilities etc. it is known as negative eugenics. Throughout this piece I will discuss the history of eugenics and how genetic engineering in a way might be a modern form of this practice dating back to Ancient Greece.

The most famous eugenics scheme was undoubtedly that of Hitler in Nazi Germany. Throughout Germany, doctors were being trained in “race hygiene.” This racial hygiene policy subsequently led to the Holocaust and the murder of which some people believe to be a figure of between 15-20 million by the German state1. Hitler wanted to increase the Aryan population of Germany as he felt the blue eyed blonde haired race were the perfect race. In the six years before World War II, the Nazi doctors sterilized some 400,000 people, mostly German citizens living in asylums who did not possess these desirable genes.2

However, Nazi German was not the only establishment to practice this seemingly unethical unfair practice. Cuba was also notorious for it up until quite recently. During the ten years President Alberto Fujimori led Peru from 1990 to 2000, allegedly 2,000 persons were involuntarily sterilized.3

Sweden Eugenics programme
Sweden is the most recent country to employ eugenic techniques such as compulsory sterilisation this occurred between the years 1936-1976 where over 63,000 women were sterilized4/5. Racial purity, public health and reduction on anti-social behaviour were the main reasons which they employed such a programme6;

  1. If a pregnancy could seriously put a woman suffering from chronic illness or permanently weakened constitution at risk of life and health.
  2. Eugenics indication meant sterilisation could be done if a person’s offspring would receive undesired genes for insanity, severe illness or physical handicap of other kind.
  3. Social indication allowed sterilisation for someone evidently unsuitable to foster a child due to mental illness, being feebleminded or other distortion of the psyche, or having an asocial lifestyle.

 Modern Eugenics

Galton defined eugenics as “the study of all agencies under human control which can improve or impair the racial quality of future generations7. (Black,2003)

As previously stated eugenics is attempting to control the production of positive and negative traits occurring in offspring. The same can be said for genetic engineering. At the simplest level genetic engineering hopes to eliminate hereditary mitochondrial diseases, this in my opinion is extremely similar to negative eugenics. Similarly the ‘designer baby’ way of genetically modifying your offspring is very similar to that of positive eugenics. Modern Eugenics methods can be seen as IVF, Embryo profiling, genetic engineering and gene therapy have all been discussed in great detail in previous posts.

I will now discuss pre-implantation genetic diagnosis as part of modern eugenics and subsequently genetic engineering. Pre-implantation genetic diagnosis (PGD) refers to genetic profiling of embryos prior to implantation. PGD is mainly used to screen for specific diseases and offer a prenatal diagnosis. PGD like many of the other methods of genetically interfering with human reproduction causes much conflict. In Germany PGD is allowed to take place only for preventing stillbirths and genetic diseases.8

However, this seemingly useful process has many risks including damage to the embryos, cryopreservation where 20% of frozen embryos do not survive. This modern eugenic method has also been linked with neuro degenerative disease such as Alzheimer’s and Down Syndrome when tested on animals.9 The prospect of a “designer baby” is closely related to this PGD technique, creating a fear that increasing frequency of genetic screening will move toward a modern eugenics movement.10

By discussing original eugenic methods and now modern eugenics methods it is clear that people have been attempting to gain control over seemingly uncontrollable i.e. human reproduction for centuries. One may argue however, that originally eugenics never tried to interfere genetically with people and just tried to skew the odds of having a genetically favourable child in their favour. However, scientific and medical advancements are now attempting to interfere with the genetic make-up of embryos in order to produce genetically favourable offspring. This unsurprisingly has been met with much conflict and with many political and religious groups describing it as unconstitutional and inhumane.

 

References;

  1. http://www.businessinsider.com/shocking-new-holocaust-study-claims-nazis-killed-up-to-20-million-people-2013-3?IR=T
  2. https://highschoolbioethics.georgetown.edu/units/cases/unit4_5.html
  1. http://edition.cnn.com/2014/01/25/world/americas/peru-sterilization/
  1. http://news.bbc.co.uk/2/hi/health/background_briefings/international/290661.stm
  1. http://www.wsws.org/en/articles/1999/03/euge-19m.html
  1. http://en.wikipedia.org/wiki/Compulsory_sterilisation_in_Sweden
  1. Black, Edwin (2003). ‘War Against the Weak: Eugenics and Americas Campaign to Create a Master Race’
  1. http://www.spiegel.de/international/germany/controversial-genetic-tests-german-parliament-allows-some-embryo-screening-a-773054.html
  1. http://www.sciencedaily.com/releases/2009/07/090721122857.htm
  1. http://humrep.oxfordjournals.org/content/18/3/465.full

Another Look at Mitochondrial DNA Transfer and ‘Designer Babies’

Hey guys,

I found two clips on youtube which I found really interesting and wanted to share with you. They focus on the issues with mitochondrial DNA transfer and ‘designer babies’.

This first clip looks at the scientific and ethical issues of mitochondrial DNA transfer. It’s interesting to hear the different perspectives and see where experts see ‘three person babies’ going in the future.

The second clip looks at how a firm in the US called 23andMe has already patented what’s called the ‘family traits inheritance calculator’. The firm said they won’t go as far to actually design babies, but only last year they announced a beneficial mutation which could effectively treat Parkinson’s disease, but having used customers DNA for research without consent. It is hard to know how far firms like this are actually willing to go when they show little ethics in the first place.

That’s all for now,

Mendel’s Minions.

Cells as information systems: Could reprogramming lead to biological babies for same sex parents?

*All views expressed in this blog are our own opinions and have come from research conducted by ourselves and do not represent the views of Trinity College Dublin.

Recently there has been major progress in stem cell research. Cambridge University in the UK and the Weizmann Institute of Science in Israel have had a breakthrough in process of creating egg and sperm cells using skin from same sex couples. This research is being led by Dr Azim Surani and Dr Jacob Hanna.

What are stem cells?

Before further discussion of this breakthrough, we’ll briefly discuss stem cells and what they do. Stem cells are cells that have the potential to grow and develop into many different cell types during early life and growth. There are two ways these stem cells are different to normal cells. They are unspecialised and even after being inactive for long periods of time, they are capable of renewing themselves through cell division. Another way these cells are different is the way under certain conditions, physiological and environmental, stem cells can change to become organ specific cells with specialised functions. (Stemcells.nih.gov)

Stem cells can come from embryos and adult humans. Embryonic stem cells are known as pluripotent stem cells. Meaning they can divide and become any type of cell in the body, meaning they have the ability to be used in numerous different ways such as treating diseases and injuries such as Parkinson’s disease, burns, rheumatoid arthritis, and so on. (ama-assn.org)

Adult stem cells were thought to have a more limited ability in becoming specialised cells as they are found in small numbers in tissues such as bone marrow and fat. Cells taken from bone marrow for example, were thought to only have the ability to change into similar cells, such as blood cells. But recently these stem cells have been used to create bone and heart cells.

Cells as Information Systems

Cells are what make up every organism. They contain genes which is all the information needed for our bodies to carry out all the functions necessary to live. In this way we can say that cells can be compared to information systems in that they are the codes and information our body (the system) processes to carry out functions.

With the recent breakthrough in stem cell research, Dr Surani, Dr Hanna and their teams have essentially “reprogrammed” cells to become “germ” cells. These germ cells are the cells that make sperm and egg cells.

The gene known as SOX17 in critical in the process of reprogramming these human cells. The first stage of this research has been successfully carried out but news of this breakthrough has caused some controversy among critics. (dailymail.com)

Controversy

It has been argued that this kind of genetic engineering could also lead to social engineering. There are many different arguments for and against same sex parenting. This new technology could lead same sex biological parents within the next two years. This technology could give gay and lesbian couples the opportunity to create an embryo containing both of their DNA. This has gained support from many gay groups already. (newsweek.com)

This blog could go on to discuss the arguments surrounding same sex parenting, but our time will be better spent discussing the other arguments and opportunities arising from this new technology.

Critics have voiced their concerns over this technology, worried that this is the next step towards “designer babies”. Designer babies would be genetically engineered children whose parents have decided on their appearance and characteristics for example.

Advocates for this new technology have described how this technology can be used for many different things, apart from helping same sex couples create a biological family and creating “designer children”.

This breakthrough has given thousands of people hope for creating a family. These germ cells can be used to create reproductive cells for males and females who are infertile due to numerous different reasons, childhood cancer and other diseases for example.

Not only can these cells potentially be used to create children essentially, they can also be used to treat age-related illnesses which are caused by epigenetic changes in cells. Epigenetic changes are changes in cells that are not caused by genetics, for example smoking changes an individual’s DNA over time. (medicaldaily.com)

Equal opportunities for everyone to have a family is something that I would personally support, but there is a serious concern being raised here for me. Will these theoretical children that have been created through this technology be sterile, or will they themselves be able to reproduce naturally? If the child was born sterile and the parents knew this before conception, is this fair on the child? And will this have major repercussions years in the future if this fertility treatment is used more and more? These are questions that must be answered before this study could be ethically used in real life.

Thanks for reading!

Please see below articles which I have referenced below:

– AMA Publications. (2015). Basics of Stem Cell Research. Available: http://www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/related-policy-topics/stem-cell-research/basics-stem-cell-research.page?. Last accessed 9th March 2015.

– Dovey, D. (2015). Stem Cell Breakthrough Opens Door For Two-Dad Babies In As Little As 2 Years. Available: http://www.medicaldaily.com/stem-cell-breakthrough-opens-door-two-dad-babies-little-2-years-323350. Last accessed 9th March 2015.

– National Institutes of Health. (2014). Stem Cell Basics. Available: http://stemcells.nih.gov/info/basics/pages/basics1.aspx. Last accessed 8th March 2015.

– Richardson, H. (2015). Biological Babies For Same-Sex Parents a Possibility After Stem Cell Breakthrough. Available: http://www.newsweek.com/biological-babies-same-sex-parents-possibility-after-stem-cell-breakthrough-309453. Last accessed 9th March 2015.

– Spencer, B. (2015). Babies with no mother: Scientists say they can make human egg from skin of two men in new hope for infertile couples. But breakthrough sparks new fears over ‘designer’ children.Available: http://www.dailymail.co.uk/news/article-2964586/Scientists-say-make-human-egg-skin-two-men.html. Last accessed 8th March 2015.

Gene Therapy Explained

In this blog I am going to explore the experimental phenomenon of Gene Therapy, which helps treat disease with the therapeutic delivery of nucleic acid polymers into patients’ cells.  The most common form of gene therapy involves replacing mutated genes with DNA that proceeds to encode a functional therapeutic gene in its place.  For years now it has been hoped that gene therapy would spark a revolution in the way diseases are treated, but it has not yet come to pass. Here I will analyse the subject in more detail, explore the pro’s and con’s of the issue and what the future could hold.

How does it Work? Is it worth it?

The concept was first devised in 1972 with a paper in Science Magazine by Friedmann & Robin titled ‘Gene Therapy for Human Genetic Disease’, and the proposal of swapping exogenous good DNA for defective DNA. The approach has developed significantly since then albeit with a few stumbling blocks along the way.  Various forms of gene therapy have been researched over the last two decades. The three most common forms in use today are:

  • The aforementioned gene replacement system
  • Inactivating mutated genes that aren’t functioning properly
  • Introducing a new gene into the body to fight disease, similar to the way a virus works.

The immediate benefits of gene therapy are obvious. It can cure previously incurable diseases, giving people an extended and better quality of life. This is such an incredible benefit that many people will be in favour of the concept, regardless of the risks and inefficiencies associated it. I would compare gene therapy with air travel. When it works it is the best possible option and when it doesn’t, which is very rare, it is disastrous.

Following the death of Jesse Gilslinger in 1999 in a clinical trial for gene therapy, there was a lot of scrutiny surrounding the concept, especially when an FDA investigation found that the scientists involved had failed to disclose previous side effects of the therapy and the fact they tested it on Gilslinger who had high Ammonia levels which should have ruled him out. This was a huge setback to gene therapy research, particularly in the USA where the FDA suspended several trials pending the re-evaluation of clinical practice and the ethics behind gene therapy. Here is a bit of background on why problems like this can arise, as well as why gene therapy has not taken the world by storm just yet.

Problems That Must be Overcome

A number of technological hurdles must first be overcome before gene therapy becomes a permanent and viable medical solution. The nature of the approach means it can be quite short lived. The therapeutic DNA introduced must remain functional and the cells containing it must be stable and long lived. Of course the fact that cells rapidly divide makes this difficult to achieve and patients may have to undergo several rounds of gene therapy, which is also an incredibly expensive process. It can cost upwards of a million dollars per round of treatment. The nature of the human immune system is another problematic feature of gene therapy. The human immune system is designed to attack any foreign object within the body; this means there is a chance of stimulating the immune system in a way that can reduce gene therapy’s effectiveness. This is even likelier for repeat treatments.

There is also the fact that gene therapy is primarily suited to single gene disorders. Multi gene disorders like Alzheimer’s, heart disease and diabetes, to which gene therapy would be a huge help, are caused by the combined effects of variations in many genes and are thus very difficult to combat effectively. Furthermore, if the gene is integrated in the wrong part of the genome it could induce a tumour, hence the need for highly trained experts and carefully refined clinical practices. However these factors merely contribute to the escalating cost.

Advances in science are helping to solve some of these problems, though cost issues remain. Investment in the area could however see gene therapy move on from being merely for critical diseases to being used for a variety of reasons.

Other uses of Gene Therapy

There is a hypothetical risk that athletes could abuse gene therapy to bolster their performance. This concept, known as gene doping, is only a concept at present as there are no known cases where athletes have been found doing this. A number of gene therapies have the potential to be used in this capacity however, so a Space Jam-esque basketball match of super charged monsters may not be as far-fetched as once imagined.

This concept also goes beyond athletic performance to normal human performance. Why pursue self improvement in the form of exercise, your diet, plastic surgery, or mentally enhancing drugs like nootropics when you could do so in a more efficient and worthwhile manner with gene therapy. This is all hypothetical at present but as gene therapy treatments get safer and more affordable, experts predict we will migrate from fixing the must fix diseases to the ‘nice to the fix’ diseases like blindness. Surely then the natural progression is onto the likes of cosmetics, life longevity and desirable traits. But where do we draw the line?

This is where the issue becomes ethically contentious. Does every unborn foetus have the right to be born unmodified? Or should they instead have the right to be born free from preventable diseases and enhanced personal characteristics? Some say yes but also argue that in that event, the service should be universally available and open to everyone, which it is not and is unlikely to ever be. The debate rages on and in further posts we will take a more in depth look at the ethics and sustainability of gene therapy.

Here are some of the sources I used while researching this article:

  • Enriquez, J. & Gullans, S. (2015) With Gene Therapy, We Could Direct Our Own Evolution. Available http://blogs.discovermagazine.com/crux/2015/03/09/gene-therapy-direct-evolution/#.VP4pqHysV1Y. Last Accessed 7th of March 2015.
  • New Scientist Magazine (2013) Gene Therapy Needs a Hero to Live up to the Hype. Available http://www.newscientist.com/article/mg22029412.100-gene-therapy-needs-a-hero-to-live-up-to-the-hype.html#.VP4pHHysV1Z. Last Accessed 7th of March 2015.
  • University of Virginia School of Law (2008) Don’t Compromise Ethics in Human Experiments, Bioethics Expert Says. Available http://www.law.virginia.edu/html/news/2008_spr/milstein.htm. Last Accessed 9th of March 2015.
  • University of Michigan School of Medicine (2011) Gene Therapy and Genetic Engineering.  Available at http://ethics.missouri.edu/Gene-Therapy.aspx. Last Accessed 7th of March 2015.
  • Genetics Home Reference (2015) What is Gene Therapy? Available at http://ghr.nlm.nih.gov/handbook/therapy/genetherapy. Last Accessed 6th of March 2015.

Britain’s Approval of Three Person Babies – an ethical perspective

With new technology comes new ethical questions and over the years we have seen many new and emerging phases. In the 1950’s to 60’s, artificial intelligence started to raise its head, along with the notion of ‘Big Brother’. In the 1970‘s to 80’s more ethical questions started to be asked relating to issues such as crime and property. In the 1990’s and 2000’s legal, anonymity and identity issues emerged. At the moment, new areas such as biotechnology and new reproductive politics have created new choices for families and have led us to ask ourselves complex questions such as, ‘should we try to eradicate physical disability?’ and ‘do we become totally self-absorbent as a result?’ The focus of our blog, the field of genetic engineering, is particularly rife with ethical concerns, because it involves tampering with some of the basic mechanisms of human biology. Katie’s post on the recent decision by the UK to approve the conception of three-person babies raises a number of significant ethical issues. One concern she outlines, is whether or not this decision is a step towards the notion of ‘designer babies’. In this post I will discuss Katie’s topic from an ethical perspective.

Since the UK has approved mitochondrial DNA transfer, critics from all over the world have voiced many concerns about this decision and the ethics of the technology. In 2012, The Nuffield Council on Bioethics conducted a six-month inquiry into the ethical issues raised by the new techniques. I will include some of the issues they discuss in their report as well as drawing upon other sources.

The most common concern is the untested nature of mitochondrial DNA transfer technology. According to a recent article in ‘The Economist’, The Human Fertilisation and Embryology Authority (HFEA), which regulates fertility treatments, have been scrupulous in assessing risks. The HFEA first granted a research licence for the technique in 2005. Since then, a scientific panel has conducted three reviews of trials in test tubes and in animals and these have given no cause for concern. However, though trials have been conducted in animal subjects, human biology is distinctly different. Some scientists argue that the reviews are flawed and fear that new, unexpected problems could be introduced. These critics argue that because the risks are so unknown and potentially great it is unethical to proceed—especially when there are alternatives such as adoption and egg donation. They say the parents’ wishes to be their child’s genetic parent should not take priority over the future health of their children and that such a social, rather than medical, benefit is in no way justifiable given the risks involved (Baylis, 2013).

Another similar concern is the potential for any health issues introduced by the donor mitochondria to be passed down to future generations. If the baby is a girl the genetic tweak in her mitochondria will be inherited by her children, and in turn by her granddaughters’ children. It is a ‘germ-line modification’, and thus irrevocable.

Even though the UK has claimed mitochondrial transfer to be proven safe, critics have voiced apprehensions about the idea of modifying whole genetic lines of human beings. They say that future individuals have the right to an unmodified human genome, and it is essentially changing their genome without their consent (Baylis, 2013). Also, since the technology is so new and untested, it would be most prudent for resulting children to participate in follow-up studies years after their conception, and possibly the entirety of their lives—both for themselves and to ensure greater safety of users in the future. Since their participation would need to be voluntary, there is no guarantee that such follow-up studies would be successful (Nuffield Council on Bioethics Report, 2012). The unborn child has no say in whether he or she wishes to participate in this experimental procedure and work with the accompanying complications.

In addition, some argue that the child’s very identity is altered. An HFEA Appeal Committee stated that mtDNA had ‘no identity effects’ however people view identity in different ways. If we look at the notion of identity that relates to self-conception, it may be altered in two ways. Possessing a disorder or impairment can sometimes be a key element contributing to an individual’s self-conception, and thus, the simple fact that the child is not ill will change their identity. In addition, the child will know that he or she is different, essentially an experiment —knowledge that might be troubling for them and impact how they view themselves and their identity (Nuffield Council on Bioethics Report, 2012).

A secondary line of criticism is the fear that genetic engineering techniques like this will lead to genetic engineering for enhancement purposes rather than purely medical ones, acting as a ‘gateway’ genetic engineering technique that could lead to eugenic applications.  This is an opinion very strongly held by the campaign group Human Genetics Alert. They believe that a path will soon emerge where parents choose ‘desirable’ traits for their children—such as high intelligence, height, and specific hair colours and that the threat of a world where ‘designer babies’ are commonplace is very real. Others feel that this complaint is as weak as any other slippery-slope argument, and that approving one procedure does not mean automatically approving others (The Economist, 2015).The Human Genetics Alert group, however, argue that in the real world, it is obvious that such a step-by-step progression is happening all the time, and that the term ‘slippery slope’, underestimates the downward forces. According to the group, ‘if we wish to avoid a future of GM ‘designer babies’, we must preserve the ban on all germ line engineering’.

advisoryBody

Using humour to get their point across! Image from hgalert.org

This decision by the UK has been an extremely controversial one that is very interesting to read about in the news. The Nuffield Council on Bioethics report came to the conclusion that ‘due to the health and social benefits to individuals and families of living free from mitochondrial disorders, and where potential parents express a preference to have genetically-related children, on balance we believe that if these novel techniques are adequately proven to be acceptably safe and effective as treatments, it would be ethical for families to use them, if they wish to do so and have been offered an appropriate level of information and support.’ It is clear that people view the consequences of this new technology very differently, with many countries pleading with the UK not to vote yes, but in the end the UK has ultimately decided that the outcome will produce more good consequences than bad. The benefits of this rapidly developing technology are exciting but its use raises daunting ethical questions about the creation and manipulation of life itself. Are new these new types of reproductive technologies extending control over women’s reproductive capacities?

Links to some of the articles and advocacy groups I have mentioned in the blog:

Thanks for reading!

Britain Approves Conception of Three Person Babies – is this a step toward ‘designer babies’?

Today, the UK has become the first country in the world to approve the conception of three people babies through in vitro fertilisation, more commonly known as IVF. Only last year, forbes.com forecasted that genetically modified humans would potentially move from science fiction to science reality, and they were right. The House of Lords voted in favour of mitochondrial replacement with 280 votes to 48. This is the first law to ever pass in any country that allows pre-birth human DNA modifications, and it is a massive step forward for many of those working alongside this project.

After researching this area, I feel it is important to address the questions that I had about this topic, and also questions that others may have such as why are these advancements necessary? What is actually involved in the process of conceiving a three person baby? How is it different from the form of IVF that we have used for years? And what are the scientific, legal and political concerns relating to ‘three person babies’?

So why are these advancements in IVF necessary?

With every baby born, the mother passes on mitochondrial DNA (for short mtDNA) to the child. MtDNA is essentially the power plants of human cells that enables us to convert energy from food into what our cells need to function on a daily basis. While the majority of the time, the mother passes on mtDNA with no complications, sometimes it can contain mutations and genetic faults that can lead to serious problems for the child, for example: blindness, diabetes, dementia, heart and liver disease, respiratory problems and epilepsy. Some of these mutations can lead to fatal diseases like Leigh Syndrome, which is a rare neurological disorder which affects babies from infancy and bit by bit, destroys their ability to think and move. MtDNA has been used in many cases of maternally inherited diseases such a Leber’s hereditary optic neuropathy (Wallace et al, 1998).

An estimated 1 in 5,000 -10,000 people carry mtDNA mutations according to the journal Nature, with approximately 152 births per year affected in the UK (Gorman et al, 2015). These are pretty scary statistics, and you can only imagine what affected families must go through on a daily basis, when their child gets progressively worse day by day, to the point where they cannot think or move independently, and there’s nothing you can do about it. Scientists see these developments in IVF as prevention rather than having to find a cure for these mutations down the line as currently there is no cure in sight for these mtDNA mutations (Cree and Loi, 2014).

So how does this work?

Mitochondrial DNA replacement involves three people – the mother, the father, and a donor. The mitochondrial DNA of the biological mother would be replaced with that of a donor with regular mitochondrial DNA to avoid destructive and dangerous cell mutations. By combining normal mtDNA from a donor with the nucleus from a prospective mothers egg, the baby will be theoretically free from mutations, and in effect, be perfectly healthy.

Click on the image for a vivid description of how this procedure works 🙂

mitochondrial-transfer Image from theguardian.com

What are the concerns?

There are many concerns about the process and scientists are concerned with the lack of testing done on humans (all previous testing was conducted on rhesus monkeys), they are also concerned about the compatibility of the donor’s mtDNA with the host nucleus. By artificially separating the mtDNA from the nucleus, scientists are worried that we may be cutting off levels of genetic communication that we don’t even know about. On top of this, there are legal concerns regarding whether the donor would be considered a true ‘co-parent’ of the child? Could the donor claim parental rights? The donor only contributes about 0.1% of the child’s DNA, but who is to say what percentage of a persons DNA must come from another human to constitute biological parenthood? According to The Guardian UK, Italian MP’s have voiced concerns that this development could ‘affect the human species as a whole’.

There are some factors that are extremely important to note here. This IVF process does not affect any of the genetic characteristics passed down from the biological mother and father like hair colour, eye colour and intelligence. It simply allows the mitochondria to function normally and allows the child to be free of mtDNA disease.

According to the New England Journal of Medicine, approximately 2500 women of childbearing age are at risk of passing on mitochondrial disease to their children in the UK, while in the US this figure is at 12,400. With this amount of cases, it is essential that something is done to counteract the possible disastrous consequences of these mtDNA mutations. Since mitochondrial DNA is passed down the maternal line, those women that are affected are guaranteed to pass their genetic defects onto any children they may have. This leave many women harrowing over the choice of whether to have biological children or not. Mitochondrial DNA replacement aims to eliminate this worry.

With the latest advancements in this industry, and how the UK has become the first country ever to lead the way in such an important venture using DNA from three people, is this a productive move? Or is it simply opening the door for ‘designer babies’ in the future? Only time will tell.

That’s all for now! Please visit our blog again soon when we will have more updates and interesting findings on the world of human genetics and engineering,

Mendel’s Minions.

Meet Mendel’s Minions

Mendel’s Minions is a team of six Trinity College students working together on an Information Systems blogging project. Our team consists of myself (Kerry), Katie, Becky, Adam, Rob and Paraic.

Information Systems is an extremely interesting discipline to study and to learn about. For our blog, we have decided to write about the complex and continuously evolving information system that is Human Genetics. Genes are made up of DNA, which act as instructions to the body to make proteins. In relation to information systems, the genes could be considered to be the information system and the DNA acts as the code to instruct the information system what to do. In using Aristotle’s four causes we could describe the system as follows: Materia – DNA, Forma – Double Helix DNA structures, Efficiens – the environment, Telos – passing on of features from parents to offspring. Taking the environment as the agent for change, for example, a child may inherit genes for tallness, but if the child’s diet lacks the correct nutrients, the genes may not be expressed (O’ Callaghan, 2009).

Theories and studies in human genetics have a long history. Ancient Greek literature can even be found to contain observations on the inheritance of physical traits in human beings. The history of human genetics as a theory-based science began in 1865, with a man called Gregor Mendel, known as the father of genetics. Mendel carried out numerous experiments on garden pea plants and resulted in two basic laws of inheritance (called Mendels first and second laws). His findings were ignored until 1900, when a number of researchers discovered the significance of his studies.  Amongst these researchers were Garrod (1902) and Pauling (1949). Concepts appropriated from human genetics have often influenced social attitudes and introduced the eugenics movement (Motulsky, 2010). One such topic is that of human genetic engineering, our chosen focus for this blog.

118096-004-547374A3Gregor Mendel  Hulton Archive/Getty Images

Genetic engineering is the artificial manipulation or alteration of genes. Many of the developments in genetic modification are available and continue to be available mainly to the wealthy West. With our greater knowledge and mapping of genes (see the Human Genome Project), we can already see gene profiling, therapy, and modification taking place in plants and animals, including humans.

Increasingly, medical practitioners are being able to predict from particular genes the health of an individual. This has led and will continue to lead to more and more knowledge about the pre-born child and wider options for treating disease. However, this also brings untold risks. For instance, it may lead to higher insurance policies for giving birth to people with suspected ‘sick genes’ or the engineering of designer babies. In essence, these new ‘sciences’ bring many new unknown potentials that we may well have to live with in the future (Macionis, Plummer, 2012).

This blog will not only focus on the technology and research that has been done on genetic engineering, but we will also look at the ethical and political repercussions that arise from it. Genetic engineering has a lot of negative connotations and we will discuss these along with positive findings that have come from the research that has been done. We chose this topic because human genetics, in particular genetic engineering, is something which all of us find extremely interesting. In the words of Rothman (1998), ‘the gene is an icon of our time’.

To begin, lets take a look at a timeline of some of the key events of the ‘new reproduction’ that have taken place in the UK:

  • 1978: Birth of Louise Brown: the first test-tube baby
  • 1982: Warnock Committee – advised on ethical issues around new reproduction
  • 1985: Surrogacy Arrangements Act – banned commercial surrogacy in the UK
  • 1987: The Pope condemned the new technologies (in his Instruction and Respect for Human Life).
  • 1990’s: Growth of stem cell research, infertility research
  • 1990: Human Fertilization and Embryology Act
  • 1991: Human Fertilization and Embryology Authority established (HFEA)
  • 1996-7: The Dolly story involving a ‘cloned’ sheep
  • 2000: President George W.Bush outlawed cloning
  • 2003: Death of Dolly
  • 2007: Debate on human-animal hybrids developed by HFEA
  • 2009: President Barack Obama reversed the Bush decision in his first 100 days: ‘medical miracles do not happen simply by accident’

(Timetable from Sociology a Global Introduction)

So those are some of the key events that you may remember reading and hearing about. In this blog we will be taking a look at what is happening out there at the moment that is really interesting us. We will be updating our blog regularly with research and opinions on developments from the world of human genetic engineering. That’s it for now. Thanks for reading 🙂

References:

Macionis, J J. Plummer, K. (5th Ed.) (2012) Sociology a Global Introduction. Harlow England, Pearson Education Limited

Motulsky, A. G (2010) Vogel and Motulsky’s Human Genetics, Springer Berlin Heidelberg, pp.13-29

O’ Callaghan, M (2009) Leaving Certificate Biology, Edco