Does Reproductive Technology Concern You?

Those interested in a career in Genomic Medicine would find the below resource of interest.

https://bsgm.org.uk/careers/ 

Those who are not sure which college or university course might best suit them within this arena; might wish to obtain greater insight into the current "hot topics" within the field of Genomic Medicine via the Lancet Series of articles and peer reviewed papers on the subject:

https://www.thelancet.com/series/genomic-medicine 

Those interested in better understanding how the UK Human Fertilization & Embryology Authority regulates both human fertility clinics and research projects involving human embryos (an overview / signposting to the legislation and laws applied) may find this resource helpful and as the organisation highlights "

Regulation is important because it ensures that the work carried out is to a certain standard; that only qualified people can do it; and that research on embryos is only done where there is a real need and in a way that’s ethical.":

https://www.hfea.gov.uk/about-us/how-we-regulate/ 

Within UK regulated assisted reproductive technology (ART), perhaps more commonly referenced by the public as "IVF", there are three important distinctions made in the area of potential genetic screening around human fertility and a prospective baby's outcomes:

1) Pre-implantation genetic testing for aneuploidy (PGT-A)

Mostly intended to try and help prevent a miscarriage of a hoped for baby.

2) Pre-implantation genetic testing for monogenic disorders (PGT-M)

Mostly intended to help parents choose what to do if their prospective baby might have a condition which is a serious inherited disease (usually those diseases which would mean the life of the prospective baby would involve considerable medical intervention and more likely be accompanied by a life-limiting or restricted life expectancy prognosis).

3) Pre-implantation genetic testing for polygenic disease (PGT-P)

"PGT-P involves simultaneously identifying the presence of many gene variants to show whether a person has a higher genetic risk compared with others for developing certain diseases."

N.B. PGT-P is UNLAWFUL for use in the UK as it does not meet the criteria for genetic testing and is currently not backed by evidence from scientific studies.

Emotional Support:

Human fertility (and the issues surrounding both natural and assisted fertility) is for many people / couples a highly emotive and very personal subject.  A range of guidance and emotional support services are accessible to people - as this UK webpage highlights:

https://www.hfea.gov.uk/treatments/explore-all-treatments/getting-emotional-support/  

I used 23 and Me, then I sent my DNA data to My Living DNA as they are much better at fine DNA structure in the British Isles. No sex chromosomal DNA from Neanderthals has survived in modern populations. The same goes for mitochondrial DNA. Strangely, the original Neanderthal Y chromosome was replaced by an early modern human Y chromosome many tens of thousands of years before Neanderthal extinction, Genetic exchange was going on for a very long time, starting well before the 'out of Africa' expansion of modern humans.

23 and Me have a historical match section, which compares your DNA with ancient DNA from archaeological remains. Most of my matches (looking at largish single chunks of DNA) are to Viking Age Scandinavians - including one from a ship burial with weapons - but also with Ötzi the Iceman, the Copper Age individual who thawed out of an Alpine glacier. I also have a match with a pre-Roman Durotrigian tribal man from Dorset and a Hun woman from Kyrgyzstan in Central Asia, which is a bit puzzling.

I keep up with publications in the autism field, mainly through Google Scholar. These days many scientific journals are open access, so they are free to view.

Daniel said:

I've seen clinical websites saying reproductive technology is a "Great Hope" for preventing autistic people and people diagnosed ADHD coming into the world.

I doubt these companies would be allowed to be the decision makers of any terminations - all they can do is offer the parents the information for them to make an infrmed decision, presumably one that is within the law.

It is the parents you should be focussing your efforts on - they make the (probable) life or death decision and if they consider autism to be a condition they do not want to pass on then this is legally within their control to decide.

Daniel said:

These bioethicists and medical "professionals" claiming we have no place in this world, and that we do not deserve to be protected from discrimination has made me write a book

Can you back up this rather extreme claim? I assume you have a vested interest in pushing your perpective (ie book sale) so thank you for disclosing this.

I would imaging that there are not cabals of scientists plotting to destroy all autists one generation at a time as this reads like - just people developing tests and trying to make money off them.

I also doubt the scientists are particularly concerned about the economy as this is a politicians job. Getting them together in some sort of think tank could result in the situation you describe but the driving force here would be the politicians.

So I would think that you need to educate the parents that having autistic children is no big deal (a tall order at best) and get to work of finding the politicians behind the policy making processes and expose them.

I've often though through my pre-diagnosis years that I would never want to have children in case I pass on whatever was making my life so hard. If I were able to decide to have children then finding a way to select which embrios were free of whatever the genes are for autism would certainly be a serious consideration.

Deciding after a preganancy would be much harder but if there were some other condition that would make the quality of life for the child very poor then I would have to seriously consider the options here. I'm glad I don't have to make that decision but I would not deny it to others.

In summary, you are barking up the wrong tree.

That is remarkable. I didn’t know DNA tests that could pick up Neanderthal variants were available commercially. I haven't yet had any DNA test to detect ancestry but hearing about yours has made me want to find out more. I expect I will have about an average number of Neanderthal variants too, but it would be terrific to see this in print! 

I have had hospital genetic testing to detect known familial cancer genes because a relatively high number of family members and I have had cancer. I’m fully recovered and forever grateful that the science exists and is progressing to help future generations. 

I agree Martin, and I think all but the most extreme eugenicists would realise this. Where did you get your DNA test done, I'd love to know this much about my families origins, I did a standard ancestry test and found out I'm 89% southern English which I think is quite high? I'd love to know how much Neanderthal I have. Do you wonder if we and Neanderthals have the same X and Y chromosomes? Is that possible? Do we have any idea of what sex chromosomes Neanderthals had?

I think one of the reasons parents are offered an abortion if they're found to have a high likeihood of Downs or other chromosomal abnormalities, is that the parents may feel unable to cope with the needs of such a child and the heartbreak of either outliving them, or watcing their child slowly die. I think it would be a horrible position to be in as an expectant parent, whatever you do is going to be somehow wrong. Where did you get this information from? Despite centuries, maybe thousands of years of exposure of sick or disabled babies being born, we still have things like Downs, so maybe its not as simple as editing a few genes?

Sorry to disapoint but there has always been this tendency for medical professionals to want to play god and they almost certainly would have got away with it and many still do, its like that old joke, 'Whats the difference between god and a consultant? God dosent' think he can practice medicine'.

I did a commercial ancestry DNA test and I have 242 Neanderthal variants, mostly single nucleotide polymorphisms. I have about an average number for a European. One makes me a better sprinter than distance runner and another means I do not get angry when hungry. They are scattered throughout my chromosomes, except the X and Y, which is universal for modern humans, no Neanderthal sex chromosomal DNA has survived.

I can debate them with their own evidence that messing up the gene pool can lead to premature extinction of humanity. 

The extremes are seen as disorders. Imagine a continuum 1-10. They'll first purge 1 and 10, making 2 and 9 the new disorders. They will then purge 2 and 9 making 3 and 8 the new disorders to be purged. I assume you see the pattern, what's genetically acceptable will get more and more narrow and eventually they'll not be enough genetic diversity to adapt to environmental changes then humanity is extinct. 

Then there's numerous others, mutations drive evolution, termination all the mutations from the pool makes humans unable to adapt to the environmental changes. 

Conditional acceptance, no autonomy. 

I approve of genetic engineering because the individual in question can decide for him or herself whether to have a treatment or not. But eugenics is done before birth where the person has no say.

Children will be smart enough to realise some parents only allowed them to be born because they did not test positive. Children will be left with the question "do my parents genuinely love me or is it conditional?" 

Hearing things like that from people who understand genetics is fascinating. I can understand how you might feel, given your experience and the sacrifice you have made. I am not knowledgeable about genetics, but I have recently got more interested in the human genome and reading about how admixing between our human ancestors, such as Denisovans and Neanderthals may have influenced our susceptibility to modern ailments such as influenza and the common cold. 

I spent most of my career as a 'genetic engineer' working on tropical diseases, please do not 'other' scientists, or disparage them as a whole. I worked on diseases that kill 500,000 people (mostly children) a year in the poorest nations on Earth. I could have earned far more working in industry and on First World diseases, but chose to devote myself to helping the most vulnerable.

There is actually a very great overlap between common autism-linked genetic alleles and alleles for high academic attainment. There is even a scientific paper called Autism as a disorder of high intelligence (BJ Crespi - Frontiers in Neuroscience, 2016). Weeding out traits for high intelligence would be like the whole of humanity shooting itself in the foot, or head. I think scare stories of eugenicists weeding out autism-linked genes is looking at an unlikely occurrence. Looking for large-scale genetic changes, often de novo (i.e. not hereditary), that are linked to certain uncommon forms of autism with very serious co-morbidities, is more likely, but still difficult and expensive to achieve. 

Sorry, I meant that for Daniel

Yes I am concerned about that, and if a choice had to be made, I would save the lives of babies with Down Syndrome who are yet to be born, over the lives of those who make decisions about the worth of human life based on flawed perceptions of what it means to be a human worthy of living. I used to volunteer in the local college as a tutor to adults with learning disabilities, several of whom had Down Syndrome, and their contribution to society was beyond measure.  They would to tell me if they liked me or not, and that made things so much easier for me. I loved being in their company. The value of Down Syndrome people is the same as any one of us, they enrich the diverse tapestry of life. 

Daniel said:

Does anyone know how I can publicly debate the eugenicists?

I am not sure exactly what you need or want here. Do you mean you want to debate person to person with Geneticists? I can’t answer that. Presumably you know who they are. Many medical geneticists have done in invaluable work on the causes and treatments of serious diseases and conditions. People are alive today thanks to their pioneering work. Perhaps some of these people are involved in the argument for or against the worth of a person with Down Syndrome, but not all are. Public debates go on all the time on social media but it can be difficult to distinguish between fact and fiction, especially if one is not knowledgeable on the subject. Social media is good for following academics who often post news of talks, conferences and their thoughts. That might be a way to get in on the debate.

I think the issue is very few people would lable themselvs as eugenasists. I'm sure the doctors who curently provide testing and abortion in cases of downs syndrome don't think of themselves as eugenasists. Something can be eugenenics with out the people involved in it thinking of themselves as eugenasists. That is one of the major issus at play.

Thanks for your reply Peter, but I'm afraid I may have not made my thoughts clear. I understand what a eugenicist is, I just don't know who these people are that are putting forward their views on who should or should not live, therefore I don't know if Daniel could publicly debate them.

The eugenics in this context is:

if there was a test for autism genes that they could do in pregnancy and parents would be told in case they wanted to abort should they be told?

A eugenasist would say yes. Fewer autism genes in the gene pool is better ... is what the typical eugenasist would say.

I have no idea how you would debate eugenicists, to be honest I don't even know who they are.

I cannot debate this as I do not have the scientific or medical knowledge and do not feel it is my place. The only thing I will say is in relation to autism, that I believe it is needed - neurodiversity is required for our society to flourish, in the same way that biodiversity is required for all species to flourish. Science should not be looking for a way to eliminate autism, it should be looking for ways to modify society to make use of the gifts autistic people can bring.

Tbh I find genetic modification less ethically problematic than mass screening with a view to termination. Only a few would be willing to geneticly modify their babies but termination is more or less routeen and could have a profound impact on the gene pool. What if parents decide red hair is a disability? Some hospitals refuse to tell parents the gender of the baby to discourage termination on the grounds of gender. Who gets to decide what parents should and should not be told?