Genetics

Caster Semenya, What’s Next?

Guest Post: Torbjörn Tännsjö, Kristian Claëson Emeritus Professor of Practical Philosophy

Statistically speaking, women perform less well than men in most sports. Their top results are 10-12 % worse than those of men. If they are to have a chance to compete at the top level, they need a protected space. At least, this has been the received wisdom among sports authorities. The example of Caster Semenya means that this policy has reached the end of the road. What has surfaced is the fact that the idea of a special protected female sphere within sports doesn’t stand up to recent knowledge within medicine and psychology. Caster Semenya is the stone that tipped the scales. The very notion of being female has been put under pressure.

The theory of science teaches us that a fruitful classification must serve an important purpose. In addition to this, the classes used should be mutually exclusive and exhaustive. Every classified individual should belong to one class only and everyone should belong to some class. Historically, we have tended to think that this is true of the classification of human beings into the classes of being female and male. We were wrong. And today it is common knowledge that we were wrong. However, the sports authorities have turned a blind eye to this knowledge.

To break it down in simple terms, there are three main ways of distinguishing between female and male. We may look at sex chromosomes, at external sex organs, or at perceived identity. It is possible to be male in terms of sex chromosomes but female in terms of both external sex organs and psychological identity. Caster Semenya gives witness to this (See Robert Johnson, ‘What No One is Telling You About Caster Semenya: She Has XY Chromosomes’, LetsRun, 2 May 2019). We know also that some individuals with female sex chromosomes (XX) and external female sex organs don’t identify as female. They seek ‘correction’ of their external sex organs. And it is the other way around with some individuals with male sex chromosomes (XY) and male external sex organs. They don’t identify as male and they seek correction of their external sex organs. Even  classification based purely on sex chromosomes is not as simple as one may think. Some individuals lack an X chromosome (X, Turner syndrome) while some have an extra X chromosome (XXY, Klinefelter). And there are other variations as well.

How should sports authorities best handle this? Should they keep turning a blind eye to these facts or should they try to face up to them?

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A third MRT-baby is on its way

Written by César Palacios-González

It has been recently reported (link in Spanish) that a 32 year old Greek woman is 27 weeks pregnant with a child who was conceived after a mitochondrial replacement technique (MRT) – in this case Maternal Spindle Transfer (MST). If true this is really big news in terms of reproductive medicine and biotechnology, we are still waiting for data to be published. If successful, this would be just the third birth following a reproductive technique that mixes the DNA of three people (you will probably remember the big media buzz a couple of years ago about ‘three parent babies’). This newest feat was achieved by a group of Spanish and Greek scientists; the clinical trial was carried out in Greece due to the fact that in Spain MRTs are not on the list of authorised reproductive techniques.

Before discussing what I consider to be the main ethical issue with this case, let us talk a bit about mitochondria and MRTs. Every human egg contains thousands upon thousands of mitochondrion. These tiny organelles have the really important task of producing the energy (in the form of ATP) that first the egg, then the developing embryo, and finally the human adult need to adequately function. It is thus not strange that when mitochondria do not work as they should the human body ‘malfunctions’. And it is also not strange that mitochondrial dysfunction more significantly affects the organs that require the most energy, for example the brain and the muscles.

To understand, broadly, what can go wrong with mitochondria, we need to bear in mind two of their characteristics: a) that they have their own DNA, and b) that they are mostly solely maternally transmitted. Regarding the former, inside every nucleated human cell there is nuclear DNA (nDNA) and there is mitochondrial DNA (mtDNA).

 

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In My Own Blood I Have Written The Things Important To Me

Adrien Locatelli, a French teenager claims to have injected DNA strands encoding verses from the Bible and the Quran in his thighs.

“I did this experiment only for the symbol of peace between religions and science … It’s just symbolic.” he told Motherboard. Sri Kosuri, a UCLA biochemist working on DNA for data storage and quoted in the paper was not amused, tweeting “2018 can’t end soon enough”.

Peak 2018, an inspiring science project, or something else? I will argue for the third option.

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Press Statement: Monstrous Gene Editing Experiment

Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV). 

If true, this experiment is monstrous. The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer. There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it.

This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.

It contravenes decades on ethical consensus and guidelines on the protection of human participants in research.

In many other places in the world, this would be illegal punishable by imprisonment.

Could gene editing ever be ethical? If the science progressed in the future and off target mutations reduced to acceptable and accurately measurable level, it might be reasonable to consider first-in-human trials (with appropriate safeguards and thorough ethics review) in one category of embryos: those with otherwise lethal catastrophic genetic mutations who are certain to die. Gene editing for this group might be life-saving; for these current babies, it is only life-risking.

These healthy babies are being used as genetic guinea pigs. This is genetic Russian Roulette.

Prof Julian Savulescu

Uehiro Chair in Practical Ethics

Director Oxford Uehiro Centre for Practical Ethics

University of Oxford

Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

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Video Series: John Harris Defends Gene-Editing in Human Embryos

Novel gene editing technologies, such as CRISPR/Cas9, allow scientists to make very precise changes in the genome of human embryos. This could prevent serious genetic diseases in future children. But the use of gene editing in human embryos also raises questions: Is it safe? Should prospective parents be free to choose the genetic characteristics of their children? What if they want to use gene editing to have a deaf child, or a child with fair skin and blue eyes? Should gene editing be regulated globally, or should each country have their own legislation? In this interview with Katrien Devolder, John Harris (Professor Emeritus, University of Manchester &  Visiting Professor in Bioethics, King’s College London) answers these and other questions, and defends the view that we have the strongest moral obligation to gene-edit human embryos, not only to prevent disease but also for the purpose of enhancement.

Blade Runner 2049, Parfit and Identity

Julian Savulescu

 

Contains spoilers for both Blade Runner films. This is a longer version of a shorter piece without spoilers, Blade Runner 2049: Identity, Humanity, and Discrimination, in Pursuit 

Blade Runner 2049, like the original, is about identity, humanity and discrimination.

Identity and Humanity

In both films, bioengineered humans are known as replicants.  Blade Runners “retire” or kill these replicants when they are a threat to society. In the original, Blade Runner Rick Deckard (Harrison Ford) has all the memories and feelings of a human and believes himself to be a human, only at the end to discover he is a replicant. In the sequel, K (Ryan Gosling) is a replicant but comes to believe (falsely) that he is Deckard’s child. In Blade Runner 2049, we are left to watch K dying, realising his memories were implanted by Deckard’s daughter.

In both films we are left wondering what difference there is between a human and a replicant. In the original, rogue replicant Roy Batty (Rutger Hauer) saves Deckard’s life (as Deckard was trying to kill him) and delivers famous “Tears in the Rain” speech:

“I’ve seen things you people wouldn’t believe. Attack ships on fire off the shoulder of Orion. I watched C-beams glitter in the dark near the Tannhäuser Gate. All those moments will be lost in time, like tears in rain. Time to die.”

Roy comes across as more human than the humans in the film. Indeed, in a preceding scene, a thorn or spike appears through his hand reminiscent of Christ, whose own identity as fully human and fully divine has puzzled Theologians for two millenia.

Both films challenge what it is to be human. In 2049, K believes the child of Deckard might have a soul because it was born.

Who are we?

The films both raise fundamental questions about personal identity: who are we? What fundamentally defines the existence of a person from one moment to the next? In both films, there is the suggestion that the biological mass, the body, is not what matters but the mind. In the original, bioengineered Roy seems as human as Deckard, as human as someone could be. In 2049, the idea is extended further still: K’s girlfriend Joi is an AI but seems as real as the other characters and her death is equally tragic.

Derek Parfit died in January this year. He was the world’s most famous moral philosopher (and his favourite film was another Ridley Scott classic, The Duellists). One of his famous ideas is that “identity” is not what matters. He articulated this in his masterpiece, Reasons and Persons (Oxford: Clarendon Press, 1984). According to Parfit, what matters is psychological continuity and connectedness, that is, the unity of our mental states.

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The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem. Continue reading

DNA papers, please

Kuwait is planning to build a complete DNA database of not just citizens but all other residents and temporary visitorsThe motivation is claimed to be antiterrorism (the universal motivation!) and fighting crime. Many are outraged, from local lawyers over a UN human rights committee to the European Society of Human Genetics, and think that it will not be very helpful against terrorism (how does having the DNA of a suicide bomber help after the fact?) Rather, there are reasons to worry about misuse in paternity testing (Kuwait has strict adultery laws),  and in the politics of citizenship (which provides many benefits): it is strictly circumscribed to paternal descendants of the original Kuwaiti settlers, and there is significant discrimination against people with no recognized paternity such as the Bidun minority. Plus, and this might be another strong motivation for many of the scientists protesting against the law, it might put off public willingness to donate their genomes into research databases where they actually do some good. Obviously it might also put visitors off visiting – would, for example, foreign heads of state accept leaving their genome in the hands of another state? Not to mention the discovery of adultery in ruling families – there is a certain gamble in doing this.

Overall, it seems few outside the Kuwaiti government are cheering for the law. When I recently participated in a panel discussion organised by the BSA at the Wellcome Collection about genetic privacy, at the question “Would anybody here accept mandatory genetic collection?” only one or two hands rose in the large audience. When would it make sense to make mandatory genetic information collection? Continue reading

Video Series: Dr Christopher Gyngell on Genetic Modification of Embryos

Dr Christopher Gyngell (Oxford) comments on the HFEA’s decision to give green light to UK researchers to genetically modify human embryos for research. A clear analysis of the most common concerns, and a suggestion for what direction the debate should take.

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