Effects of gene editing: you decide

Techniques like gene editing may bring more equality, but can just as easily bring less. Now is the time to make up our minds about the future because we can’t leave this up to a handful of experts who advise the government.

Most of you will have heard about the recent CRISPR-Cas9 breakthrough. On 26 July, scientists in Oregon successfully used the technique to replace a defective piece of DNA with a regular piece of DNA. It concerned a gene with faulty DNA that normally results in heart disease.

This was only one small step, involving fertilized egg cells that were allowed to develop for no more than a few days and weren’t implanted in a womb.

But when techniques like CRISPR become routine, which “defects” are we going to edit out and which ones will we leave intact? And will this be the domain of commercial enterprises who sell their services or should this be part of everyone’s health care?

At the moment, we have the practice that fetuses are tested for certain conditions. To give you an idea of what this means in practice, in 2009, the abortion rate for fetuses diagnosed with Down’s syndrome in the UK was 92%.

Also, embryos created with IVF are subjected to PGD (pre-implantation genetic diagnosis), which has been around for decades. The use of IVF is rising.

Right now, the UK’s Human Fertilisation and Embryology Act 2008 states that “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop: (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

Who decides what a serious physical or mental disability, a serious illness, or any other serious medical condition is? In practice, that’s the UK Human Fertilisation & Embryology Authority. Currently, embryos with one of 400 conditions such as a genetic form of dwarfism called achondraplasia or Down’s syndrome are never used in IVF in Britain. Deselection of embryos with other conditions is awaiting approval.

Will the same eventually happen when techniques like CRISPR go mainstream?

This may all sound far off right now, but within the next few decades, human procreation is bound to change drastically. It is likely that we will eventually stop using sex to create babies. Instead, we will make all our babies “in the lab” and let the embryo develop in an artificial womb.

There is nothing wrong with that. We’ll get used to it, just like we got used to cars, trains and planes or the fact that women can attend universities now whereas they weren’t allowed to in the not too distant past.

But it will also mean that we’ll be able to do a lot more genetic tweaking. We need to start thinking about these upcoming changes now. What kind of society do we want to see develop? Do we want people to resemble each other more and behave in similar ways?

There are several reasons for not eagerly fixing too many “defects” that lead to viable human beings who live worthwhile lives, other than that groups of people are starting to demand the right not to be “edited out”.

  • The first is that there are currently several ongoing trends of emancipation. This includes the emancipation of persons with a wide range of conditions who we used to lock up and keep out of society. Deaf people and blind people, people with learning disabilities and so on. This emancipation is leading to accomplishments that we didn’t consider possible only a very short while ago. Particularly people with Down’s syndrome currently keep astonishing us all. Many have jobs now, and some serve as city councillor, become artists or are getting academic degrees.
  • A second reason is that we don’t know whether we may have a particular need for persons with various conditions such as autism spectrum disorder in the future. It is unlikely that we will continue to communicate the way we do now. Maybe we’ll end up communicating solely via images. We may well discover that those of us who now seem best suited for keeping up in society will fall behind then because they lack certain talents. We need the greatest neurodiversity possible.
  • A third reason is that lots of so-called impairments are nothing more but hindrances created by society. Better education and continued emancipation will see many of these hurdles disappear.
  • A fourth reason is that technological progress itself will come up with a wide range of solutions to accommodate everyone. Once more humans start integrating technology into their bodies – we are already seeing some of that – there soon won’t be any remaining limitations for those currently still considered impaired.

For more on the topic, see also this article in Nature, by David Cyranoski:
China’s embrace of embryo selection raises thorny questions (16 August 2017).

What do I know about pain and suffering, you ask?

What do I know about pain and suffering, you ask?

In view of what I have been saying and will still write about little Charlie Gard’s situation and other topics in bioethics, I feel that it is justified when people ask what experience I have with pain and suffering in (physical) medical situations.

Here are answers.

Personally, I’ve been very lucky. I have a bunch of allergies, but none very serious, and the worst medical situations I’ve had were a traffic accident that led to a very serious concussion and a broken nose (in my teens) and pneumonia (in early 2017). I’ve also undergone a simple procedure to drain my sinuses (in my early 20s). Oh, and I have pigment dispersion syndrome, a fairly mechanical eye condition that is a high risk factor for glaucoma. I don’t have children of my own, by the way.

I was born in 1960 – I am a Libra – and am the eldest of three daughters; we are 3 years and 6 years apart (and a universe, it seems). My mother had a miscarriage after me, a baby boy who would have been called Paul, which is why the name of my teddy bear was Paul. (I didn’t name him.) Shortly after my birth or my sister’s birth – I don’t remember which it was; she told me about this much later – my mother found a lump in one of her breasts. She was told it was just a swollen milk gland and went on with her life.

There is a possibility that my mother was given DES (diethylstilbestrol) after that miscarriage. Both my sisters (and I) are cancer-free, to my knowledge. My sister has had two C-sections, however, and in theory, DES may have played a role in my mother’s illness, if it was given to her, though even then, it is only associated with a modestly increased risk of breast cancer.

(My other sister has no children either.)

As my mother’s was the only case of breast cancer in my maternal family that I am aware of, there clearly doesn’t seem to be a particular gene involved. My sisters and I have long passed the age at which my mother contracted breast cancer.

My mother had all her teeth removed surgically as was still often done in those days, after which she came home in an ambulance and spit a lot of blood into a bucket beside her bed. She had surgery for a large kidney stone which she got to take home in a little tube and which had caused a pain in her flank. I think that kidney surgery was in 1968.

(Off and on, you can hear from my phrasing how young I was at the time, how much or little I understood about what was going on.)

She became increasingly unwell and was unfortunately sent to physical therapy… sigh… because her cancer had already metastasised so much that it had gotten into her bones. She’d come home in incredible pain. I don’t remember what got “them” (whoever) to figure out that something else was going on.

The breast was surgically removed and the wound never healed, no matter how much ointment was applied. The cancer also affected my mother’s vocal chords; she told me that if she’d been for example a teacher, she would have needed surgery for that as well. She was treated by Dr Lokkerbol (who received training in the UK, by the way), underwent radiation (cobalt) and had some kind of chemo (not “real” chemo, but I can’t explain what wasn’t “real” about it, other than maybe it was less aggressive and didn’t make her go bald). It was (also) administered at home, by a nurse.

It was a slightly yellowish fluid that came in glass ampoules. It was not very stable and I’ve had to tell the pharmacy several times to return it when I could see that it had already gone bad (flocculation/crystallization). My mother’s white cells were monitored because the chemo made them go down and when the number of white cells declined too much, the administration of the chemo had to stop. This was the opposite of leukemia, my mother explained to me, because then you had too many white cells.

She had increasingly trouble walking, needed a cane, and in the end couldn’t even go to the bathroom unassisted. I remember helping her, holding her arm, steadying her, and wondering how my mother was feeling about her daughter helping her go to the bathroom. My mother had had a very happy childhood, but was raised in a fairly old-fashioned manner, after all. One did not talk about periods, for instance. They were a dark secret best kept to oneself. Sanitary napkins as big as diapers were provided and a special kind of (horrible) lined underwear, and that was that.

Also, my youngest sister almost died too in the meantime when her appendicitis was misdiagnosed as a bladder problem. That misdiagnosis is quite common, but if it hadn’t been for my father’s vigilance, my sister really might have died. Her fever ran up to nearly 42 degrees C and the hospital was cooling her with ice. They couldn’t operate, had to wait for my sister to stabilize first. I think my sister was 4 or 5 at the time. (Children visitors weren’t allowed on the ward, by the way.)

Anyway, I must have been in my 5th year in primary school (which has 6 years in total) when my mother became increasingly unwell as I was taking French conversation classes in our local city centre – my mother loved how the language sounded and loved saying mu-sjuh even though its proper pronunciation is muss-yuh – and I had to be taken there and collected again. I was able to finish the first year, but there was a second year, in my 6th year in primary school, from which I had to drop out pretty soon. Taking me to the language school and collecting me often was arranged in conjunction with hospital visits one way or another until that was no longer possible. (I later also sometimes or often accompanied my mother to the hospital shortly before she died, by the way. I had Wednesday mornings off in the school year in which my mother passed away. There were so many students that year that the school was forced to introduce early and late classes.)

Meanwhile, our dog got cancer too and had to be put down. She was 6 months older than I was.

Then one day, my mother’s favourite sister stopped by. She sat on the wooden bench in our large kitchen, in a serious conversation with my mother. I don’t remember whether she was on her way to or on her way back from a hospital visit. I think she was on her way home, though, and had decided to stop in on my mother to tell her about how she’d been bleeding. The bus she took passed our house and the bus stop was very close to our home. My mom’s sister – my aunt – died shortly after that visit. That must have been cervical or uterine cancer.

During one of her many hospital stays, my mother said no and put her foot down when they wanted to place her in the room in which her sister had died. (My mother had also said no and put her foot down when the kindergarten teachers wanted to keep me for another year because I was so young, at 5. I went on to be the youngest in my class and the one with the best grades for 6 consecutive years in primary school, so thanks, Mams.)

Meanwhile, one of my mother’s older brothers had been diagnosed with a brain tumour after he developed problems with an arm. The doctors didn’t tell him at the time; presumably the tumour was inoperable. I don’t know which symptoms that eventually resulted in, but when the decline came, it happened fast. He passed away shortly after my mother, who passed away in her sleep at home in February 1975, my dad and one of my mother’s brothers sitting next to her, my dad asleep at the time, but awoken by my uncle. My mother was only 42.

Everybody responds to these situations in their own way. There is no right or wrong about it. My mother’s family seemed to deal with her death in their characteristic cold manner (stiff upper lip). One evening, I found them arguing outside with my dad over the exact wording in an announcement that had already appeared in a newspaper (so the arguing served no purpose, in my eyes). It got too much for my dad (complete lack of stiff upper lip) who literally ran off, onto the moors behind our home. I shouted at my aunt and uncle that they had to understand that the man had just lost his wife, for crying out loud, and went to retrieve my dad. I was angry with my relatives, back then, but I can see now that they merely were dealing with the situation in the only way they knew. My dad was often angry with the medical profession. It wasn’t always justified – sometimes it was just his powerlessness talking – but in some cases, he certainly did have a point.

Both my parents had little education beyond primary school, by the way.

The farm on which my mother grew up.

By contrast, my mother’s mother passed away at 91 or thereabouts, after these three of her children had died. She had already lost several children at very young ages as well as her husband. I have a lot of my grandmother in me, which is only becoming clearer as I am getting older. It is a very interesting observation, one that makes me smile and makes me feel more connected with her, and with my family in general.

My other experiences with medical situations are fairly “remote”.

My mother’s remaining sister passed away of stomach cancer, but she was in her 80s then. Stomach cancer is often diet-related, so I understand. One of her remaining brothers passed away from lung cancer in his 70s. He’d been exposed to a lot of dust and had been a smoker (cigars, though he probably smoked cigarettes when he was younger). He also was incredibly stubborn. (I can’t help but wondering whether he perhaps was also allergic to wheat, barley and rye, which can cause lung problems, and which wouldn’t have helped. Besides cancer, allergies seem to run on my mother’s side of the family.) The remaining brother passed away “from old age” as far as I know. I wasn’t around for any of that as, again, I was out of the country.

My father was diagnosed with pneumonia in October last year, and with lung cancer in November; he passed away shortly before Christmas, and was 83 at the time. I wasn’t around for that either.

I know that one of my French-born cousins on my father’s side contracted lung cancer in her 50s or so and passed away shortly after that, leaving a child of only 12-years old or so behind. My cousin’s husband had died shortly before her. Another cousin then adopted the child, bless him.

I know of and knew 5 or 6 women in science who fell ill in their 50s, were diagnosed with cancer and passed away shortly after. I’ve been to the homes of a few of them. A business partner contracted prostate cancer at an age much younger than usual, seemed cured and then succumbed after all. Dammit. He called me in 2010, and explained to me everything that had been going on and I am still grateful for and touched by the vulnerability he was willing to show during that conversation. (I wish I could have been there for him a little bit more than I was able to at the time.) I know one brilliant woman in science who was also a dedicated and talented modern dancer who very cruelly developed progressive MS and my heart bleeds for her as I am typing this. (This situation particularly makes me feel angry and powerless, by the way.)

I also used to have an older friend whose health started to falter when she was only in her 50s. She already needed a hip replacement then. During the surgery, the surgeon accidentally cut through a muscle, which was discovered during a second surgery after she had fallen and needed surgery to repair the damage of the fall. After that, she was so happy she could walk normally again. (I can still see her in her flat, proudly and delightedly showing me that she could walk again, walking back and forth. Look, look! “Ik loop weer als een kieviet!”) She later contracted two kinds of cancer (one of which was leukemia) and passed away too, but I was not around for that. (Her partner, whom I also used to know, developed cancer of the esophagus. He passed away at home, made comfortable with a lot of morphine, his feet being massaged at the time. Some things were definitely done right in that case. I was not around, not in the country.)

Yes, I also know a few people who had their gallbladders removed, usually very urgently, but that’s different. There are other people, of course, who have crossed my path and who have experienced medical tribulations – one of them a Dutchwoman in France who beat a very bad cancer prognosis – but I can’t really claim them as part of their life. And of course, there are other kinds of pain and suffering, but I am leaving that for another time.

Having seen my mother suffer for so long, witness her be in pain for so many years, made me immensely relieved for her when she passed away (though for myself I despaired). I therefore must always be aware of having an emotional response when someone is seriously ill. I do not believe in extending life artificially as long as possible in all situations. It can be very selfish and be the expression of a consumerist view of medicine. Doctors are not omniscient and omnipotent. They are mere humans, just like all of us. Nature – life – is still the real head honcho, when it comes to the crunch.

(But, I’d probably have loved to be a veterinarian, I realized late in life. A false belief that I was squeamish – am not – and couldn’t handle the sigh of blood – I sure can – kept me out of it. When I was volunteering in wild-bird rehab and they called me inside after someone else had fainted, that slowly became clear to me and I did explore that. So I can probably put myself in the shoes of the doctor somewhat and for instance understand that what may come across as arrogance in doctors often isn’t. This does not mean that I don’t get ticked off at physicians who really are out of line, of course.)

So like I said, I have to be aware of my own feelings (a gut response which I may not always notice right away) and therefore I try to apply logical reasoning – which can come across as very cold – as much as possible. That is also the way to arrive at just (fair, unbiased) conclusions and definitions that hold up regardless of feelings or believes and protects against abuse and arbitrariness. It has a highly clarifying function. It makes things a lot clearer. It is also highly practical.

There was a time when we pointed the fingers at doctors and accused them of playing God when they helped patients stay alive. Now we’re often quick to accuse doctors of playing God when doctors don’t want to force anyone who isn’t viable to stay alive. Technology is starting to make crucial differences. This leads to many very difficult questions about which we – preferably in a global consensus – have to make decisions. We need to start agreeing on what we do want to do and what we don’t want to do. We need good guidelines.

For the record: Notably my middle sister will remember a different past. She had a persistent skin (yeast?) infection as a newborn, I think, but as I was 3 at the time, can I really have remembered that? May it have concerned my youngest sister around whose birth I was sent to stay with an aunt and uncle? I remember that I was not sure if she was real, at first, as a newborn baby. (She looked like a doll!)

But my middle sister also had children’s diseases that my youngest sister and I did not contract. She experienced mumps, whereas we all fell ill with measles at the same time. She also was ill with jaundice as a child (presumably due to some kind of liver infection; the common Dutch phrase was “yellow paint”). Both my sisters got chickenpox as children, which I had when I was in my early 20s. And, my middle sister was sent away to stay with an aunt and uncle around the time of my mother’s death; she once told me that herself and I had not remembered that. So her memories are very different.

That must have been very hard for her because I do remember that when she was 4 or 5, she insisted on seeing our paternal granddad before he died, tubes and all, in hospital, and fought to be kept out of school that afternoon. (None of us three had been close to him; I don’t think he was a pleasant man at all.)

We all deal with pain, suffering and death in our own way. There is no “right” way or “wrong” way.

Both my sisters saw my mother after she had passed away, at the funeral home. I never saw her dead. I didn’t want to. I wanted to preserve the memory I had from when she was still alive. She used to sing often. and was often pictured with a very broad smile in various photos before she became really ill.

My response to Dr Seidel’s post on the BMJ blog (Baby genome screening—paving the way to genetic discrimination?)

I just submitted the following comment, here:
http://blogs.bmj.com/bmj/2017/07/05/markus-g-seidel-baby-genome-screening-paving-the-way-to-genetic-discrimination/
It is still in moderation. has been accepted. Yes, it was far from flawless – I wrote most of it at the spur of the moment – but I think that what I mean is clear enough. I have done some editing in the version below.

Dear Dr Seidel, thank you for making these very important points.

I am taking the opportunity to offer a few suggestions for discussion and invite more views on these issues. Some of what I write below only emerged during the writing of this response and may not be watertight. Can you withhold initial judgement, think along with me and see it as an exercise in exploring the various angles?

But first of all, please forgive me my shortcomings; I phrase various concepts differently than you do as my background is not in medicine and I tend to shy away from jargon. Also, what I say is not limited to newborns, but that will be obvious to this audience. The principles largely remain the same, whether we are talking about a pre-embryo, a fetus or a newborn, and whether I call them person, individual or child. (Legally, this is currently much more complex, as you know.) My focus in this discussion does not extend to persons beyond the age of majority (likely not even beyond 8 or 10, in practice) and I am also keeping the concept of euthanasia out of the discussion even though it is related. Worst of all, I throw all techniques related to genetic material into one big pot because it enables me to see the bigger picture better.

I write from my own perspective of an opinionated white woman in the west, but when I say “we”, my intention is to refer to the human species. People from other cultures will undoubtedly spot biases in my western views; I would like those people to point out those biases.

You ask whether genome screening for newborns will pave the way to genetic discrimination. You also raise the question of the interpretation (and reliability) of such data and you have privacy concerns.

With regard to the latter, I think that we will slowly have to accept that the digital age comes with the loss of privacy in many ways. That does not have to be as dramatic as it sounds. Privacy is a changing concept anyway, which also has a cultural angle to it. The realization that people from different generations and from different cultures have slightly different views on what privacy is may add some perspective that can make us breathe easier. So we should probably become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences of that loss, if any. The real issue is not the loss of privacy, but abuse of personal information.

In my opinion, what we need to do is ensure non-discrimination and make certain that genomic information will only be used to improve any individual’s (medical) care. (The data can become part of studies, anonymized or not; we also need to redefine consent, but I am going to leave that out of this discussion too.) In other words, genomic information must only be used to enable and allow human beings to flourish.

Even a word like “flourish” or “thrive” is highly ambiguous, though. I mean it in a non-materialistic manner, whereas some others do not at all. Perhaps I can break it all down into stages to show what I mean within this specific context. Perhaps I can break it down to show what I mean within this context.

You mention the Hippocratic Oath, which some define as “Do no harm”. Harm is another concept that we don’t agree on yet and that we – therefore? – haven’t been able to define well.

I think that we need to start applying the principle of non-discrimination to all new human life. I believe that we should consider every human individual is just as valuable – in a non-materialistic manner – as every other human individual.

When I toss this around, I run into a peculiar dilemma. While I must see a deaf or a blind person (as an example) as equally valuable as a hearing or sighted person, I cannot accept it when a hearing or sighted person is deliberately made (permanently) deaf or blind, for instance during a mugging or a work-related accident. This also applies with regard to so-called augmentations. I cannot take a human being against his or her wishes and carry out a nose reconstruction or even inject botox. That makes me realize that harm done to a human appears to be any interference or change that occurs against that human being’s wishes and is implemented by someone else.

For now, I have to limit this to physical changes because the area of psychological changes is too complicated. (Just think of schools; we do not take bad teachers to court for being bad teachers, but we do take bad surgeons and physicians to court for being bad doctors, also because the evidence related to the latter is often much clearer.) Physical interference that occurs against a person’s wishes can of course also result in psychological changes, but that does not actually matter for the concept of harm within this context.

The next problem I then run into is the fact that particularly an embryo, fetus or newborn has a very limited ability to express wishes, but and that also holds for young children. If I try to put myself in the shoes of a child, however, it becomes possible to define harm in spite of that limitation.

This – putting themselves in the shoes of the child, as adults – is what parents, guardians and other carers do all the time, of course. They sometimes have to make the decisions for the child and express the child’s wishes for the child, as if they were the child, using the knowledge they have as adults, knowledge that the child will have in the future but does not possess yet.

So, lLet’s step into a child’s feet, then. It is hard to imagine a sick or injured child that would want to get sicker and sicker and sicker or want to have a permanently festering wound resulting from an injury caused by a fall. So it is fair to say that anything we do toward remedying such a situation is in accordance with the child’s wishes, in essence, even in cases in which the child cannot even say “please make the pain go away”. It is what the child would want if it possessed the knowledge and abilities of an adult.

So, the first step in part of enabling a human – a child – to flourish is to attempt to prevent any deterioration of the child’s health.

We may have to start agreeing that this cannot be considered harm within this context, even if the chance of success is small, certainly in cases for which there are no alternative remedies. We may even have to decide that doing nothing constitutes harm when there is still an option of doing something.

If a child has appendicitis, a surgeon will have to cut into the child’s abdomen in order to remove the appendix to prevent deterioration of the child’s health or even death. Strictly speaking, cutting into a child’s abdomen constitutes inflicting an injury, but in this case, as it is done with the intention of preventing greater harm, namely the deterioration of the child’s health, it does not constitute harm within this context we do not see it as harm. (This may be be an example of where I display a western bias?)

(Of course, we can still take the surgeon to court if his or her work fails to meet professional standards, but that is a different type of harm. We certainly need professional standards.)

We can also take a child to the dentist and the dentist may have to inflict some discomfort in order to prevent deterioration of the child’s health.

By contrast, we should not, however, drag a child along kicking and screaming to have its ears pierced as this is not done with the aim of preventing a deterioration of health. (If a child asks to have its ears pierced, there is a clear wish on the side of the child.)

Note that the intention matters. When a procedure is carried out with the intention of wanting to prevent deterioration of health, we never have 100% certainty that the intended result will be achieved. (This may have implications for how we think about practices carried out in other cultures. Keep this at the back of your mind. Our own western views are not the only views that hold value.)

The second step vital part of enabling a human being to flourish is to do everything we can within a daily-life context to allow that person to thrive on the basis of the person’s given physical (and mental) situation.

We send children to playgrounds to let them play with other children and test their physical limits, we feed them, clothe them and provide shelter as well as love and all those other concepts that are hard to measure but easy to grasp. In essence, this is no different for children who are, say, blind or deaf or who have Down syndrome.

The BBC news site just highlighted a very nice albeit exceptional example of what I mean by flourishing within this context: http://www.bbc.co.uk/news/m…

To do everything we can to allow that child to thrive is also required for children who are born with a medical condition that requires some form of medication or extra nutritional care to prevent deterioration of health. This, I think, is where standard genomic testing of newborns can play a pivotal role. These days, parents still too often have to conclude that something is seriously genetically wrong with their child on the basis of the deterioration of the child’s health, which in some cases means that irreversible damage has already occurred to the child’s health.

So, failure to provide such testing (screening) from the point in the future at which we know how to do and use this properly and reliably could perhaps also be seen as harm as it could lead to the preventable deterioration of a child’s health and would not encourage the child to thrive.

The third step next level within this context of enabling someone to flourish – and this is where it gets even trickier – is interfering with the child’s genetic make-up.

We may feel that the child is flawed, whereas the child is actually viable and does will not suffer a deterioration of health or be at great risk of certain complications if we allow it to live. At the moment, we often prevent such a child from coming into the world. This is where, I think, we need to draw the line and have to take a step back. It is a discriminatory practice because it appears to express a value judgement.

I also think that because of limited resources, we may need to approach this in a stepped manner.

What I mean is that if we initially limit techniques like CRISPR and gene therapy to all situations in which a resulting child would have “a life not worth living”, then we might have a fairly just and affordable way to start implementing CRISPR, gene therapy and anything else that may come along. Once we’ve done that, we can slowly start to take it forward, extend it to other conditions. The costs of such techniques will come down. and if we start with rare diseases that are currently incurable, we also limit the initial costs of implementation.

The loss of privacy may actually become an advantage because openness makes it also much easier to detect abuse of information and to safeguard against discrimination.

One of the reasons why I strongly believe that we need to start implementing non-discrimination for all new human life is the following. Once humans start interfacing with technology, other so-called impairments – which are currently often either biased opinions or restrictions imposed by society – cease to be impairments, taking away much of the motivation for “correcting” these individuals.

Moreover, not only do we – the human race as well as society – need diversity, we may have future needs for abilities of which we currently don’t realize that some people possess them. Those may well be people who are currently considered “impaired” or “flawed”. Junk DNA was once considered just that, too.

As I already indicated, we need a workable definition of what constitutes a life not worth living and once we have one (I may have found one, by the way, based on the principle of humanity), we may end up concluding that these are the primary cases in which we actually have a duty to interfere with the child’s genetic make-up.

So I agree with you that we have to exercise restraint, in spite of all the enormously exciting developments we currently see around us. Discrimination is not the only concern and neither are interpretation and costs. We don’t know all the possible consequences yet of the application of any of those new developments, even if we think we do.

We have made many decisions in the past without asking questions that now are so blatantly obvious in hindsight. Did nobody foresee that insecticides might also affect bees and birds and amphibians, to name just one example of a past mistake, albeit a highly significant one that now also affects human fertility?

We have another reason to take it slow, namely the fact that laws and regulations lag behind, evolve in response to arising situations in real life, and rarely anticipate on what may happen in the future. Legal professionals, too, tend to think conservatively and in a geographically limited manner. It’s probably the UN and WHO who should start taking the lead in this area, and guide us into the future. Do they need a push? Should we apply pressure?

Because perhaps more than anything else, we need to work toward reaching a global consensus (including legislation) on such important matters, irrespective of how challenging and impossible that may seem. It was also once completely unimaginable that we’d have humans land on the moon, so if we did that, then we can accomplish so much more than we think we can.

Reblogged: Human genome editing: We should all have a say

File 20170731 22134 1s9uda
Controversial gene editing should not proceed without citizen input and societal consensus.
(Shutterstock)

Françoise Baylis, Dalhousie University

Shoukhrat Mitalipov, a reproductive biologist at Oregon Health and Science University, is nothing if not a pioneer. In 2007, his team published proof-of-principle research in primates showing it was possible to derive stem cells from cloned primate embryos. In 2013, his team was the first to create human embryonic stem cells by cloning. Now, in 2017, his team has reported safely and effectively modifying human embryos with the MYBPC3 mutation (which causes myocardial disease) using the gene editing technique CRISPR.

Mitalipov’s team is not the first to genetically modify human embryos. This was first accomplished in 2015 by a group of Chinese scientists led by Junjiu Huang. Mitalipov’s team, however, may be the first to demonstrate basic safety and efficacy using the CRISPR technique.

This has serious implications for the ethics debate on human germline modification which involves inserting, deleting or replacing the DNA of human sperm, eggs or embryos to change the genes of future children.

Ethically controversial

Those who support human embryo research will argue that Mitalipov’s research to alter human embryos is ethically acceptable because the embryos were not allowed to develop beyond 14 days (the widely accepted international limit on human embryo research) and because the modified embryos were not used to initiate a pregnancy. They will also point to the future potential benefit of correcting defective genes that cause inherited disease.

This research is ethically controversial, however, because it is a clear step on the path to making heritable modifications – genetic changes that can be passed down through subsequent generations.

Beyond safety and efficacy

Internationally, UNESCO has called for a ban on human germline gene editing. And the “Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine” – the Oviedo Convention – specifies that “an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.”

In a move away from the positions taken by UNESCO and included in the Oviedo Convention, in 2015 the 12-person Organizing Committee of the first International Summit on Human Gene Editing (of which I was a member) issued a statement endorsing basic and preclinical gene editing research involving human embryos.

The statement further stipulated, however, that: “It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved, based on appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.”

Mitalipov’s research aims to address the first condition about safety and efficacy. But what of the second condition which effectively recognizes that the human genome belongs to all of us and that it is not for scientists or other elites to decree what should or should not happen to it?

Modification endorsed

Since the 2015 statement was issued, many individuals and groups have tried to set aside the recommendation calling for a broad societal consensus.

For example, in February 2017, the U.S. National Academy of Sciences and National Academy of Medicine published a report endorsing germline modification. It states unequivocally that “clinical trials using heritable germline genome editing should be permitted” provided the research is only for compelling reasons and under strict oversight limiting uses of the technology to specified criteria.

Seeds of change in Canada

In Canada, it is illegal to modify human germ cells. Altering “the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” is among the activities prohibited in the 2004 Assisted Human Reproduction Act.

Worried that “Canadian researchers may fall behind on the international scene” and that “restrictive research policies may lead to medical tourism,” the Canadian Institutes for Health Research (with input from the Canadian Stem Cell Network) has begun to plant the seeds of change.

In its Human Germline Gene Editing report, CIHR hints at the benefits of changing the legislation. It also suggests professional self-regulation and research funding guidelines could replace the current federal statutory prohibition.

Future of the species

With Mitalipov’s technological advances and increasing suggestions from researchers that heritable modifications to human embryos be permitted, it is essential that citizens be given opportunities to think through the ethical issues and to work towards broad societal consensus.

We are talking about nothing less than the future of the human species. No decisions about the modification of the germline should be made without broad societal consultation.

The ConversationNothing about us without us!

Françoise Baylis, Professor and Canada Research Chair in Bioethics and Philosophy, Dalhousie University

This article was originally published on The Conversation. Read the original article.

Reblogged: Super-intelligence and eternal life: transhumanism’s faithful follow it blindly into a future for the elite

File 20170609 32437 9sfejw
Distant Earth.

Alexander Thomas, University of East London

The rapid development of so-called NBIC technologies – nanotechnology, biotechnology, information technology and cognitive science – are giving rise to possibilities that have long been the domain of science fiction. Disease, ageing and even death are all human realities that these technologies seek to end.

They may enable us to enjoy greater “morphological freedom” – we could take on new forms through prosthetics or genetic engineering. Or advance our cognitive capacities. We could use brain-computer interfaces to link us to advanced artificial intelligence (AI).

Nanobots could roam our bloodstream to monitor our health and enhance our emotional propensities for joy, love or other emotions. Advances in one area often raise new possibilities in others, and this “convergence” may bring about radical changes to our world in the near-future.

“Transhumanism” is the idea that humans should transcend their current natural state and limitations through the use of technology – that we should embrace self-directed human evolution. If the history of technological progress can be seen as humankind’s attempt to tame nature to better serve its needs, transhumanism is the logical continuation: the revision of humankind’s nature to better serve its fantasies.

As David Pearce, a leading proponent of transhumanism and co-founder of Humanity+, says:

If we want to live in paradise, we will have to engineer it ourselves. If we want eternal life, then we’ll need to rewrite our bug-ridden genetic code and become god-like … only hi-tech solutions can ever eradicate suffering from the world. Compassion alone is not enough.

But there is a darker side to the naive faith that Pearce and other proponents have in transhumanism – one that is decidedly dystopian.

There is unlikely to be a clear moment when we emerge as transhuman. Rather technologies will become more intrusive and integrate seamlessly with the human body. Technology has long been thought of as an extension of the self. Many aspects of our social world, not least our financial systems, are already largely machine-based. There is much to learn from these evolving human/machine hybrid systems.

Yet the often Utopian language and expectations that surround and shape our understanding of these developments have been under-interrogated. The profound changes that lie ahead are often talked about in abstract ways, because evolutionary “advancements” are deemed so radical that they ignore the reality of current social conditions.

In this way, transhumanism becomes a kind of “techno-anthropocentrism”, in which transhumanists often underestimate the complexity of our relationship with technology. They see it as a controllable, malleable tool that, with the correct logic and scientific rigour, can be turned to any end. In fact, just as technological developments are dependent on and reflective of the environment in which they arise, they in turn feed back into the culture and create new dynamics – often imperceptibly.

Situating transhumanism, then, within the broader social, cultural, political, and economic contexts within which it emerges is vital to understanding how ethical it is.

Competitive environments

Max More and Natasha Vita-More, in their edited volume The Transhumanist Reader, claim the need in transhumanism “for inclusivity, plurality and continuous questioning of our knowledge”.

Yet these three principles are incompatible with developing transformative technologies within the prevailing system from which they are currently emerging: advanced capitalism.

Perpetual doper or evolutionary defunct?
Shutterstock

One problem is that a highly competitive social environment doesn’t lend itself to diverse ways of being. Instead it demands increasingly efficient behaviour. Take students, for example. If some have access to pills that allow them to achieve better results, can other students afford not to follow? This is already a quandary. Increasing numbers of students reportedly pop performance-enhancing pills. And if pills become more powerful, or if the enhancements involve genetic engineering or intrusive nanotechnology that offer even stronger competitive advantages, what then? Rejecting an advanced technological orthodoxy could potentially render someone socially and economically moribund (perhaps evolutionarily so), while everyone with access is effectively forced to participate to keep up.

Going beyond everyday limits is suggestive of some kind of liberation. However, here it is an imprisoning compulsion to act a certain way. We literally have to transcend in order to conform (and survive). The more extreme the transcendence, the more profound the decision to conform and the imperative to do so.

The systemic forces cajoling the individual into being “upgraded” to remain competitive also play out on a geo-political level. One area where technology R&D has the greatest transhumanist potential is defence. DARPA (the US defence department responsible for developing military technologies), which is attempting to create “metabolically dominant soldiers”, is a clear example of how vested interests of a particular social system could determine the development of radically powerful transformative technologies that have destructive rather than Utopian applications.

Designing super-soldiers.
Shutterstock

The rush to develop super-intelligent AI by globally competitive and mutually distrustful nation states could also become an arms race. In Radical Evolution, novelist Verner Vinge describes a scenario in which superhuman intelligence is the “ultimate weapon”. Ideally, mankind would proceed with the utmost care in developing such a powerful and transformative innovation.

There is quite rightly a huge amount of trepidation around the creation of super-intelligence and the emergence of “the singularity” – the idea that once AI reaches a certain level it will rapidly redesign itself, leading to an explosion of intelligence that will quickly surpass that of humans (something that will happen by 2029 according to futurist Ray Kurzweil). If the world takes the shape of whatever the most powerful AI is programmed (or reprograms itself) to desire, it even opens the possibility of evolution taking a turn for the entirely banal – could an AI destroy humankind from a desire to produce the most paperclips for example?

It’s also difficult to conceive of any aspect of humanity that could not be “improved” by being made more efficient at satisfying the demands of a competitive system. It is the system, then, that determines humanity’s evolution – without taking any view on what humans are or what they should be. One of the ways in which advanced capitalism proves extremely dynamic is in its ideology of moral and metaphysical neutrality. As philosopher Michael Sandel says: markets don’t wag fingers. In advanced capitalism, maximising one’s spending power maximises one’s ability to flourish – hence shopping could be said to be a primary moral imperative of the individual.

Philosopher Bob Doede rightly suggests it is this banal logic of the market that will dominate:

If biotech has rendered human nature entirely revisable, then it has no grain to direct or constrain our designs on it. And so whose designs will our successor post-human artefacts likely bear? I have little doubt that in our vastly consumerist, media-saturated capitalist economy, market forces will have their way. So – the commercial imperative would be the true architect of the future human.

System-led evolution.
Shutterstock

Whether the evolutionary process is determined by a super-intelligent AI or advanced capitalism, we may be compelled to conform to a perpetual transcendence that only makes us more efficient at activities demanded by the most powerful system. The end point is predictably an entirely nonhuman – though very efficient – technological entity derived from humanity that doesn’t necessarily serve a purpose that a modern-day human would value in any way. The ability to serve the system effectively will be the driving force. This is also true of natural evolution – technology is not a simple tool that allows us to engineer ourselves out of this conundrum. But transhumanism could amplify the speed and least desirable aspects of the process.

Information authoritarianism

For bioethicist Julian Savulescu, the main reason humans must be enhanced is for our species to survive. He says we face a Bermuda Triangle of extinction: radical technological power, liberal democracy and our moral nature. As a transhumanist, Savulescu extols technological progress, also deeming it inevitable and unstoppable. It is liberal democracy – and particularly our moral nature – that should alter.

The failings of humankind to deal with global problems are increasingly obvious. But Savulescu neglects to situate our moral failings within their wider cultural, political and economic context, instead believing that solutions lie within our biological make up.

Yet how would Savulescu’s morality-enhancing technologies be disseminated, prescribed and potentially enforced to address the moral failings they seek to “cure”? This would likely reside in the power structures that may well bear much of the responsibility for these failings in the first place. He’s also quickly drawn into revealing how relative and contestable the concept of “morality” is:

We will need to relax our commitment to maximum protection of privacy. We’re seeing an increase in the surveillance of individuals and that will be necessary if we are to avert the threats that those with antisocial personality disorder, fanaticism, represent through their access to radically enhanced technology.

Such surveillance allows corporations and governments to access and make use of extremely valuable information. In Who Owns the Future, internet pioneer Jaron Lanier explains:

Troves of dossiers on the private lives and inner beings of ordinary people, collected over digital networks, are packaged into a new private form of elite money … It is a new kind of security the rich trade in, and the value is naturally driven up. It becomes a giant-scale levee inaccessible to ordinary people.

Crucially, this levee is also invisible to most people. Its impacts extend beyond skewing the economic system towards elites to significantly altering the very conception of liberty, because the authority of power is both radically more effective and dispersed.

Foucault’s notion that we live in a panoptic society – one in which the sense of being perpetually watched instils discipline – is now stretched to the point where today’s incessant machinery has been called a “superpanopticon”. The knowledge and information that transhumanist technologies will tend to create could strengthen existing power structures that cement the inherent logic of the system in which the knowledge arises.

This is in part evident in the tendency of algorithms toward race and gender bias, which reflects our already existing social failings. Information technology tends to interpret the world in defined ways: it privileges information that is easily measurable, such as GDP, at the expense of unquantifiable information such as human happiness or well-being. As invasive technologies provide ever more granular data about us, this data may in a very real sense come to define the world – and intangible information may not maintain its rightful place in human affairs.

Systemic dehumanisation

Existing inequities will surely be magnified with the introduction of highly effective psycho-pharmaceuticals, genetic modification, super intelligence, brain-computer interfaces, nanotechnology, robotic prosthetics, and the possible development of life expansion. They are all fundamentally inegalitarian, based on a notion of limitlessness rather than a standard level of physical and mental well-being we’ve come to assume in healthcare. It’s not easy to conceive of a way in which these potentialities can be enjoyed by all.

Will they come along for the ride?
Shutterstock

Sociologist Saskia Sassen talks of the “new logics of expulsion”, that capture “the pathologies of today’s global capitalism”. The expelled include the more than 60,000 migrants who have lost their lives on fatal journeys in the past 20 years, and the victims of the racially skewed profile of the increasing prison population.

Grenfell Tower, London, 2017.
EPA/Will Oliver

In Britain, they include the 30,000 people whose deaths in 2015 were linked to health and social care cuts and the many who perished in the Grenfell Tower fire. Their deaths can be said to have resulted from systematic marginalisation.

Unprecedented acute concentration of wealth happens alongside these expulsions. Advanced economic and technical achievements enable this wealth and the expulsion of surplus groups. At the same time, Sassen writes, they create a kind of nebulous centrelessness as the locus of power:

The oppressed have often risen against their masters. But today the oppressed have mostly been expelled and survive a great distance from their oppressors … The “oppressor” is increasingly a complex system that combines persons, networks, and machines with no obvious centre.

Surplus populations removed from the productive aspects of the social world may rapidly increase in the near future as improvements in AI and robotics potentially result in significant automation unemployment. Large swaths of society may become productively and economically redundant. For historian Yuval Noah Harari “the most important question in 21st-century economics may well be: what should we do with all the superfluous people?”

We would be left with the scenario of a small elite that has an almost total concentration of wealth with access to the most powerfully transformative technologies in world history and a redundant mass of people, no longer suited to the evolutionary environment in which they find themselves and entirely dependent on the benevolence of that elite. The dehumanising treatment of today’s expelled groups shows that prevailing liberal values in developed countries don’t always extend to those who don’t share the same privilege, race, culture or religion.

In an era of radical technological power, the masses may even represent a significant security threat to the elite, which could be used to justify aggressive and authoritarian actions (perhaps enabled further by a culture of surveillance).

Life in the Hunger Games.
© Lionsgate

In their transhumanist tract, The Proactionary Imperative, Steve Fuller and Veronika Lipinska argue that we are obliged to pursue techno-scientific progress relentlessly, until we achieve our god-like destiny or infinite power – effectively to serve God by becoming God. They unabashedly reveal the incipient violence and destruction such Promethean aims would require: “replacing the natural with the artificial is so key to proactionary strategy … at least as a serious possibility if not a likelihood [it will lead to] the long-term environmental degradation of the Earth.”

The extent of suffering they would be willing to gamble in their cosmic casino is only fully evident when analysing what their project would mean for individual human beings:

A proactionary world would not merely tolerate risk-taking but outright encourage it, as people are provided with legal incentives to speculate with their bio-economic assets. Living riskily would amount to an entrepreneurship of the self … [proactionaries] seek large long-term benefits for survivors of a revolutionary regime that would permit many harms along the way.

Progress on overdrive will require sacrifices.

God-like elites.
Shutterstock

The economic fragility that humans may soon be faced with as a result of automation unemployment would likely prove extremely useful to proactionary goals. In a society where vast swaths of people are reliant on handouts for survival, market forces would determine that less social security means people will risk more for a lower reward, so “proactionaries would reinvent the welfare state as a vehicle for fostering securitised risk taking” while “the proactionary state would operate like a venture capitalist writ large”.

At the heart of this is the removal of basic rights for “Humanity 1.0”, Fuller’s term for modern, non-augmented human beings, replaced with duties towards the future augmented Humanity 2.0. Hence the very code of our being can and perhaps must be monetised: “personal autonomy should be seen as a politically licensed franchise whereby individuals understand their bodies as akin to plots of land in what might be called the ‘genetic commons’”.

The neoliberal preoccupation with privatisation would so extend to human beings. Indeed, the lifetime of debt that is the reality for most citizens in developed advanced capitalist nations, takes a further step when you are born into debt – simply by being alive “you are invested with capital on which a return is expected”.

Socially moribund masses may thus be forced to serve the technoscientific super-project of Humanity 2.0, which uses the ideology of market fundamentalism in its quest for perpetual progress and maximum productivity. The only significant difference is that the stated aim of godlike capabilities in Humanity 2.0 is overt, as opposed to the undefined end determined by the infinite “progress” of an ever more efficient market logic that we have now.

A new politics

Some transhumanists are beginning to understand that the most serious limitations to what humans can achieve are social and cultural – not technical. However, all too often their reframing of politics falls into the same trap as their techno-centric worldview. They commonly argue the new political poles are not left-right but techno-conservative or techno-progressive (and even techno-libertarian and techno-sceptic). Meanwhile Fuller and Lipinska argue that the new political poles will be up and down instead of left and right: those who want to dominate the skies and became all powerful, and those who want to preserve the Earth and its species-rich diversity. It is a false dichotomy. Preservation of the latter is likely to be necessary for any hope of achieving the former.

The ConversationTranshumanism and advanced capitalism are two processes which value “progress” and “efficiency” above everything else. The former as a means to power and the latter as a means to profit. Humans become vessels to serve these values. Transhuman possibilities urgently call for a politics with more clearly delineated and explicit humane values to provide a safer environment in which to foster these profound changes. Where we stand on questions of social justice and environmental sustainability has never been more important. Technology doesn’t allow us to escape these questions – it doesn’t permit political neutrality. The contrary is true. It determines that our politics have never been more important. Savulescu is right when he says radical technologies are coming. He is wrong in thinking they will fix our morality. They will reflect it.

Alexander Thomas, PhD Candidate, University of East London

This article was originally published on The Conversation. Read the original article.

How do we approach the future?

In the science, health and environment section of thehindu.com, an article appeared under the heading “Do we understand the genome well enough to let Big Pharma jump into it?”.

I left the following brief reply.

You make important points.

Markus G. Seidel, who works at the Department of Pediatrics and Adolescent Medicine of Medical University Graz in Austria, just wrote something similar on the site of the BMJ, with regard to babies. He asks whether genome screening for newborns will pave the way to genetic discrimination. He too raises the question about interpretation (and reliability) of such data. He also discusses privacy issues.

http://blogs.bmj.com/bmj/2017/07/05/markus-g-seidel-baby-genome-screening-paving-the-way-to-genetic-discrimination/

But I wanted to write more…

With regard to the latter, I think that humanity will slowly have to accept that the digital age comes with the loss of privacy in many ways. Privacy is a changing concept and there also is a cultural angle to it, so people from different generations and from different cultures have slightly different views on what privacy is. We probably should become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences.

In my opinion, what we need to do is ensure non-discrimination and ensure that genomic information will only be used to improve any individual’s (medical) care. In other words, genomic information must only be used to enable and allow human beings to flourish. All human beings. In a non-materialistic way.

(Note that this is not the same as eradicating everything we may not like. But we seem to have a tendency to want to do that, unfortunately, and we need to curb that urge. We need a great deal of diversity to function well as a species and as a society, for many reasons. Good and bad cannot exist without each other – as cheesy as it may sound. There simply is too much we don’t know yet, and we therefore cannot foresee all possible consequences of everything we do. Eradicating everything that seems bad to us may be bad too.)

That will require two things: good legislation and regulations and a global consensus on these issues.

Particularly the latter is a major challenge. That is why we need to discuss these topics broadly and entice people to move out of their mental comfort zone, allowing them to explore other people’s views without instantly rejecting them. Our own views aren’t the only valid or even valuable views, but they tend to feel that way to us.

Legislation, however, also has a problem as it currently tends to display a big lag relative to what’s technologically possible. It does not anticipate (much), but responds after what is happening in practice forces it to respond. Also, legal scholars still tend to contemplate situations and consequences with regard to their own jurisdictions only.

So it looks like there is a great need for discussions pervaded by a spirit of tolerance (the willingness to step out of one’s mental comfort zone and listen to people from other cultures and generations) and a forward-thinking attitude.

By “forward-thinking”, I don’t mean “blindly embracing everything science and technology have to offer” because in the past, we’ve often forgotten to ask many questions we should have asked. That, for example, appears to have happened when we embraced pesticides. They seemed such a good thing, initially, that we never considered their obvious potential for bad.

Do you agree or do you see it differently? Do you think we also need to change big pharma, and if so, in which ways, and how could we approach that?

PS
I write from my own perspective of an opinionated white woman in the west without ties to big pharma.

Charlie Gard finally at peace

Initially, it felt wrong to say much more about it than that. So I didn’t.

A day has passed.

Many lessons are being learned, and Charlie Gard’s life and death have not been in vain. I too will be doing a write-up. For the sake of future Charlies and future babies’ parents, but also for the sake – I hope – of all the people who were touched by Charlie Gard’s short life. Towards greater understanding, I hope. Towards more compassion, too.

(Personally, I primarily do it to learn from it and because I enjoy the analytical process and the reasoning. But all the people who write about these issues help pave the way to a future in which we deal with such situations much more elegantly.)

I too felt torn the way everybody else seemed to be torn, and I too generally responded more emotionally rather than rationally to what I read here and there, and I too, like almost everybody else, didn’t have many facts.

Charlie Gard’s condition fell within my definition – not my feelings! – of what constitutes a life not worth living. We need objective definitions to prevent inequality and injustice, and, more importantly, to prevent harm.

I also seem to have managed to define harm for situations like these a while back, and having let Charlie Gard try the nucleoside therapy does not appear to qualify as such within my definition (which I need to write up properly). Whether or not Michio Hirano had a financial interest in the matter is immaterial.

So I have a lot of thinking – and writing – ahead of me, but it looks like my definitions continue to hold up. That comes as a surprise. It makes me conclude that I may be doing something good and useful, something worthwhile exploring.

That’s scary – for several reasons – and powerful – empowering – at the same time.

I will soon post something about my own experiences with this kind of pain and suffering – the medical kinds of pain of suffering – in view of the fact that I say so many things about other people’s pain and suffering in such situations, in what may occasionally come across as a cold and calculated manner to some.

Playing God

There was a time when doctors were being accused of playing God when they helped patients stay alive. Now they’re accusing doctors of playing God when doctors don’t want to force a baby who isn’t viable to stay alive. (Alive?)

There is a lot wrong in the medical world. I agree. And I too have had to tell doctors things they didn’t know about although they’re supposed to be the experts and I admit that it used to surprise me. Discovering that I sometimes knew more than the doctors I went to for advice.

I don’t have the impression that the Charlie Gard case is one of those.

Charlie is being abused, by having been forced to stay alive this long. He is NOT fighting.

After having been forced him to stay alive – against nature – for so long, the decent option is now to let him have that experimental treatment, as I’ve said in a previous post.

But what will happen if the treatment has no effect? There will be more accusations, more lawsuits and more media drama because this stopped being about Charlie Gard a long time ago.

They will then fight to continue to keep him on a ventilator. (The disagreement in court yesterday about what one of the parents apparently had said three months ago seems to indicate that, along with the statement that the parents will continue to fight for the baby as long as he continues to be on a ventilator.)

That said, there are no 100% guarantees in medical matters. Sometimes, someone does wake from a coma twenty years or so later. True. But someone who ends up in a coma used to be viable. That makes a big difference. It means there was a well-functioning body with the healing abilities that entails.

http://www.independent.co.uk/news/uk/home-news/charlie-gard-army-high-court-medical-experts-great-ormond-street-hospital-murder-doctors-lying-a7840236.html

“We will not be silenced,” they chanted.

Like I wrote above, this ceased to be about a little baby a long time ago. (I had that feeling from the beginning but I was not sure about it, and kept my opinion to myself until very recently.)

This is just as consumerist as wanting to design your own babies according to specs.

I hope that I am wrong about this. I do. I hope that they’ll take Charlie to the States and that a miracle occurs and he’ll grow into a strapping young man. But that’s not going to happen and I am afraid for little Charlie who is denied a say in this and who will also be denied a say if the treatment has no or no significant effect.

I heard a very significant mistake by an American news anchor yesterday.  She talked about the current “treatment”. But Charlie Gard is not being “treated” and the legal proceedings are not about GOSH wanting to stop a treatment, which some people apparently seem to think.

Read this, too (GOSH statement):
https://t.co/X9WHHjhl3u

Read also this (opinion piece in The Guardian):
https://www.theguardian.com/commentisfree/2017/jul/09/the-guardian-view-on-charlie-gard-reason-and-unreason?CMP=soc_3156

Also, there are huge differences between Charlie Gard’s situation and the situation of Ashya King and his parents, as I have mentioned before.

See: https://www.judiciary.gov.uk/judgments/judgment-and-family-court-orders-in-the-matter-of-ashya-king/

Ashya King is healthy now.

Charlie Gard matter in court again

Is all of this still about Charlie Gard, actually?

Or is this an expression of a consumerist view of children?

Been wondering about that for a while now…

http://edition.cnn.com/2017/07/10/health/charlie-gard-new-hearing/index.html

The parents seem to claim that Charlie is “fighting”. But if he was, he wouldn’t require life support. He is being kept alive artificially.

Charlie “fighting” would be to take him off life support and finding him able to live on his own, surprising them all.

https://www.theguardian.com/uk-news/2017/jul/10/charlie-gard-key-questions-answered

It’s true, though, that if this child had been in the US, the experimental treatment would already have started and doctors would have a better idea of how it would affect the child.

With the case having been dragged through the courts for so long, and the postponements in terminating life support and allowing the child a peaceful passing, it’s now becoming more logical to allow the kid the treatment, if only because he’s been forced to stay alive so much longer now and would already have passed away if it hadn’t been for the legal battle.

If this news article is correct, though, then the parents’ battle is not about what is best for Charlie, by the sound of it:

http://www.wxyz.com/news/national/baby-charlie-gards-parents-storm-out-of-court-hearing

“Yates interrupted Francis as he said that the parents had said they would not want to prolong Charlie’s life in its present state, only if there was hope of improvement. “I never said that!” she exclaimed from her seat behind her barrister.”

Let’s see if I can find this back in Joshua Rozenberg’s tweets. Yes. Though he does not specify what the disagreement was about.

 

Nature itself considers Charlie Gard absolutely not viable. That is a very strong clue. Nature does its best to limit lives not worth living as much as possible.

Forcing Charlie Gard to stay alive is like insisting on having a purple parrot if its natural color is green and the other color goes with, say, severe liver disease. That’s not about what’s best for the parrot.

(I apologize to those who feel hurt by putting it this way. Maybe I should add that I had a green parrot for 21 years and loved her very dearly.)

Who loves to be glued to a desk?

There are very few geologists who went into earth science because they loved sitting at a desk behind a computer all day long (though particularly structural geologist do a lot of modelling).

I am no exception. Below is a view from the lamproite plug that I had in my fieldwork area in south-eastern Spain one year (Cancarix).

See what I mean?

By the way, a lamproite plug is like a tiny volcano with molten rock that came up from very deep in the earth. Kimberlite – which can contain diamonds – is a bit like that too.

I loved doing fieldwork, and I miss it. In fact, when I spend too much time behind a computer, typing up reports and so on, I tend to develop neuromusculoskeletal complaints of shoulders, arms, wrists and hands. I don’t like being indoors all the time either.

It is one of the reasons why I enjoy working with wildlife. It enables me to spend more time outside. I even have a small tent for this purpose.

Northern Ireland abortion refugees: Supreme Court — UK Human Rights Blog

R (o.t.a A and B) v. Department of Health [2017] UKSC 41, 14 June 2017 – judgment here. Sometimes The Law comes to the rescue. And by this I do not mean constitutional law versus populism or the rule of law versus raw-knuckled fighting. It just happens that, occasionally, litigation drawn from ordinary life encapsulates more political […]

via Northern Ireland abortion refugees: Supreme Court — UK Human Rights Blog

Human rights for just a few, that’s discrimination. Human rights apply to all human beings.

It has just been the 6th anniversary of an important human rights case, that of Mark and Steven Neary. Steven, who is autistic, was detained in local authority care for over a year before his dad used the Human Rights Act to get him home. RightsInfo has made a powerful short film to mark the […]

via A powerful new human rights film  — UK Human Rights Blog

Abortion

Writing the first edition of my essay “We need to talk about this” – the second edition is in the works – forced me to think about issues I had never thought about before in great depth and I had to leave many of them untouched at the time.

For example, I am a feminist and I have always believed in a woman’s right to abortion. While I was considering how we could regulate the new eugenics, I ran into boundaries. It included having to think about how to fit abortion into the topic. That was a significant hurdle.

I was no longer able to say “of course women should be able to have abortions” – which I had always done in the past – but had to think about why and when they should, regardless of my own personal feelings. Because what I was writing about selecting pre-embryos and fetuses clashed with the general ideas that I had always entertained about abortion but had never examined in detail.

Legislation and protocols can sound very cold to people, but it’s not enough to just state something like “we think this is very very good” or “we think this is very bad”. That wouldn’t work in practice. If you want to make sure legislation is solid and leaves little room for abuse (deliberate misinterpretation), you end up with language that can come across as heartless. But that does not mean that the legislation (or protocol) is heartless or that the people who wrote it are!

It can be difficult to get that across, I have seen in various online comments (on for example the Groningen Protocol). It works the same way for traffic rules or rules for building skyscrapers. The law can’t just say something vague like “drivers should be careful” and “buildings should be safe” and leave it at that.

When Obamacare was introduced, a staunch Republican (and stauncher Libertarian) wrote to me that it was ridiculous that its legislation was taking up more than 2,000 pages or something like that. (Who would ever read that?)

I replied to him that I knew a jurist who works in precisely that area in the Netherlands and explained what that kind of legislation has to include. Fortunately, he listened to that explanation.

Unfortunately, I have found that even people who see themselves as the voice of reason (and sometimes as having absolute wisdom, too) aren’t always willing to listen to what someone “from the other side” is saying.

A certain brand of callousness

In my essay “We need to talk about this” I mention that I have on occasion been shocked by a certain brand of callousness that I have seen (too) often in Britain (both in the media and in real life). Here is one example of what I mean.

 

You can only justify such occurrences by applying a tweaked form of utilitarian reasoning. One person was suffering, but “wasn’t really harmed” and the number of people who were enjoying what was being done to George Cheese was greater than 1, hence these occurrences “increased overall happiness”.

The fact that utilitarianism was associated with the higher classes may have given this type of reasoning or events an unfortunate aura of “cleverness”. It could also explain why anyone who condemns the sort of things that were being done to George Cheese is seen by some as “naïve” and “not quite with it”.

Utilitarianism also attached little importance to individual persons’ rights. It would have stopped short from, say, stabbing someone like George Cheese as opposed to setting his clothes on fire and stuffing him into the trunk/boot of a car. This is the kind of background, I think, that enabled Simon Wright to say “It did not go too far.”

In reality, abuse targets like George don’t get to LIVE. All they are allowed to do is wait for their natural deaths. George Cheese said “FUCK THAT!” and stood up for himself in the only way he had left.

At least there is an inquest. That’s good.

 

 

What do you get if you cross George W. Bush, Nigel Farage, Donald Trump and Geert Wilders?

What do you get if you cross George W. Bush, Nigel Farage, Donald Trump and Geert Wilders?

Ehm… an ethics professor at Oxford University???

I have read a few of Julian Savulescu’s papers and they are certainly all very eloquently written. That said, not only did I sense a vague underlying fear as motivation for some views he expressed in a particular article (Procreative Beneficence: Why We Should Select the Best Children), those views scared me.

Then I ran into a report of a talk he gave in Japan in 2011 and it provided some clues. It appears that he is worried that the human species won’t survive much longer and believes that the solution lies in (tinkering with genes but also) ensuring that persons with so-called undesirable genes no longer come to life.

He is not wrong regarding his fears for the human species. Unfortunately, some of his argumentation is flawed, resembling the kind of reasoning that is sometimes presented by, say, the Daily Mail or the Daily Express and then attacked by scientists for being biased, incomplete and unbalanced.

This gives some of his argumentation a strongly irrational tinge and that is probably why some of his views scare me. He works at the University of Oxford (and was previously based at the Royal Children’s Hospital in Melbourne). I expect a lot more from someone in his position and I certainly expect a lot more from academic papers. He has a responsibility to do much better and is surely capable of it.

For example, eradicating the incidence of asthma by eradicating asthmatics – which he proposed in that paper I refer to above – is like making sure that house fires no longer happen by demolishing all housing.

Bad air quality – one of the factors that play a role in asthma – is generally not caused by asthmatics and so eradicating asthmatics won’t improve air quality. As I am sure he knows, other factors include stress, certain medications, and allergies for wheat and other foods. Poverty – living with mold-covered walls and ceilings – is also a major factor. We should address those issues first, also because they are linked to other negatives and would help ameliorate those as well.

I agree with him that we humans face huge challenges, but I believe that there are currently much better ways of tackling them than eugenics. As two examples, I recommend the TED Talks by his learned colleagues Jane McGonigal and Rutger Bregman. The former has very attractive – and very up-to-date – ideas for how we can boost our problem-solving skills and the latter knows how we can lift the IQs of a very large group of people by roughly 14 points and save a lot of money in the process without too much trouble. It would also help make things better for asthmatics. Both are much more elegant scenarios than the scenario of eugenics (by any name).

His Procreative Beneficence article includes a table that lists 13 traits under the heading “behavioural genetics”:

I feel it is best to refrain from comment on that table. It speaks for itself.

Next, I wanted to take a look at the book he and his Swedish colleague Ingmar Persson published in 2012 (Unfit for the Future) and my jaw dropped when I read the summaries on the Oxford Scholarship site. Literally.

In it, they use the phrase “weapons of mass destruction” many times. They list “weapons of mass destruction” under the heading “catastrophic misuse of science” and combine it with keywords like “xenophobia” and “multiculturalism” but also “biological weapons,” “nuclear weapons” and “terrorism”. They write that “the multiculturalism of current liberal democracies make it likely that they will contain groups of people hostile to their ideology.”

They appear to think that “it might be possible for a well-organized terrorist group” “or even single individuals” to construct “weapons of mass destruction” and that this should be addressed by administering the hormone oxytocin, which they consider a drug. To me, this sounds like a combination of George W. Bush, Nigel Farage, classic Donald Trump and Geert Wilders speaking. I was astonished.

Persson and Savulescu put the cherry on the icing by the following two sentences:

“However, it is admitted that research into biomedical agents of moral enhancement is still in its infancy and that it is too early to judge its fruitfulness. There is also the general difficulty that means of moral enhancement have to be administered by morally imperfect people.”

Will this be developed into the next James Bond film, I wonder?

The book summary starts with the following sentence: “It is easier for us to harm each other than to benefit each other, e.g. easier to kill than to save a life”. That statement does not sound particularly healthy to me and I wonder what a psychologist or psychiatrist might make of it. I see people save other people’s lives on a daily basis and I don’t live that far from Oxford so my environment can’t be that different from Savulescu’s, though there is likely more poverty in my neck of the woods than in and around Oxford. People saving other people’s lives may happen more frequently than he and Persson think, even in countries like Syria.

Thankfully, I found some common ground in half of the chapters. Our planet is in trouble. I agree with that. But is it true that families with babies – young parents tend to produce a lot of oxytocin – are better for the environment than the rest of us?

What would happen if you throw in a bit of extra testosterone, another hormone that seems to be taking the world by storm as a bioenhancer at the moment? Testosterone is linked to aggression, after all. Would that cancel out the effect of the oxytocin? And for women, a bit of progesterone may be better than oxytocin but then again, estrogen is better for memory even though it tends to make women cranky. Less sweet. Testosterone on the other hand generally is not that good for memory.

Coffee is, though, particularly for people at more advanced ages and coffee has a number of other benefits. It is very good for the liver, even helps diseased livers recover, for instance, and it is a mild bronchodilator that works for about four hours after administration.

What does oxytocin do for memory? And, might it cause many women to lactate?

And could the unbridled practice of eugenics negatively influence oxytocin production in parents? Would it pitch hubris (such a powerful word!) and consumerism versus humility and gratitude? Could it push society toward psychopathy on the human diversity spectrum that ranges from extreme altruism to psychopathy?

I don’t think there is a one-pill-fits-all solution for the problems the world faces, with or without administration by morally imperfect people.

I did something similar. I went the other way and wrote a deliberately provocative essay – “We need to talk about this” – that highlights some of the downsides of eugenics. (The booklet has its limitations; I am working on a second edition.) I am just an ordinary educated citizen who believes in embracing (bio)diversity – also because there are good reasons for it – and in inclusive solidarity. I am not a professor at Oxford University. Maybe that’s a good thing.

I have also communicated the above to professor Savulescu, via ResearchGate. I don’t expect to hear back from him.

 

 

 

PS
I would like to add a few words about what the BBC posted on its website on 24 May. Attacks like the one in Manchester – note that this does not involve the biological or nuclear weapons of mass destruction Persson and Savulescu are worried about – take expertise that is difficult to come by and require a lot of planning and preparation, which increases the chance that agencies like MI5 will find out about such plans long before they can be executed, the BBC wrote. The type of individual required– not the type that Persson and Savulescu are concerned about, as that would be much rarer – is “very rare” according to the BBC.

Hormones and (mental and physical) health

For most women, PMS is an unpleasant but manageable part of their period. But for 5-8% of women (around 80,000 in the UK), their symptoms are so severe they can be fatal.

Laura experienced anxiety and panic attacks into her twenties, and was forced to temp because she couldn’t hold down a job. “Every month I’d get so tired I’d have to sleep 18 hours a day for three days. I started getting suicidal thoughts.”

She was suffering from Severe PMS or, as it is sometimes referred to in the UK, Premenstrual Dysphoric Disorder. The condition is recognised by the NHS.

“PMDD is actually the American Psychiatric Association’s definition of one type of Severe PMS,” says consultant gynaecologist Dr Nick Panay. The UK’s definition is slightly different. “‘Severe symptoms interfere with someone’s ability to function normally.”

This is an important article. Read it:
http://www.bbc.co.uk/bbcthree/item/82dcd957-fb96-422c-b037-ad2645d7d3b7

I mention something similar in my book “We need to talk about this” in relation to a woman whose child was taken from her womb because she was in advanced pregnancy and has bipolar disorder. Hormones can wreak havoc. Blame the hormones, not the women. Don’t punish the women. Support them.

I happen to know a highly intelligent and spunky woman with bipolar disorder. She has a PhD and her own business. She was hospitalized twice. Want to take a guess as to when that happened? Right. When she had her daughter – who is now an adult and doing fantastically well, I might add – and when she was going through menopause.

Cut people some slack. Don’t punish them for their conditions, certainly not when the condition is otherwise highly manageable and well-managed by the woman in question. Punishing someone with bipolar disorder for going through a rough patch is like punishing someone else for having a bad flu.

By the way, Italy has just introduced period leave for women. And in case that makes you wonder about this, the gender pay gap in Italy is lower than in quite a few other European countries.

Less-waste living

I am not happy with how much plastic I put in the trash all the time and want to change that.

I am going to start by making my own tooth paste. That’s a baby step. That’s how we all learned to walk. Baby steps. Easy does it.

Here are three useful pages with information:

http://askthedentist.com/homemade-toothpaste/

http://www.diynatural.com/homemade-toothpaste/

http://www.diynatural.com/whitening-tooth-powder/

I am also going to start using a wooden toothbrush and I am going to experiment with making my own shampoo.

I noticed that that could produce more waste instead of less if I am not careful. Coconut milk usually is not packaged in plastic but in cans/tins (easy to recycle) and I can use the remainder of the coconut milk in food, but liquid soap is packaged in plastic. Then I found directions for turning bars of soap into liquid soap do I will look for bars that are packaged in paper and turn them into liquid soap.

There is also this method for washing hair with baking soda.

I am going to give the coconut shampoo version a shot to see how it works out and to that end, I will first try to turn bars into liquid soap. If the latter works, I also will no longer have to buy liquid hand soap in plastic. I can use the plastic pump flasks that I already have. (The pumps don’t work on many of them, so I’ve kept a few that work and I refill those anyway.)

Another advantage of using home-made toothpaste is that it won’t contain any nanoparticles. Many products contain nanoparticles these days, but there is no technology yet for removing them from waste streams.

Grow your own food inside a computer

At least, that is what it looks like, like you’re growing vegetables inside a computer case. This is a TED Talk by Caleb Harper.

TED Talks won’t let me embed this TED Talk, so you will have to click on the above link.

You can grow your own tasty Isle of Wight, Spanish or Floridian tomatoes, lettuces, broccoli, and a lot more, by recreating local climate and nutritional conditions with the aid of a computer, using recipes that you can exchange for free.

I want one!!!

This YouTube video show you how you can build one. This is not for everyone, so it is a great projects for neighborhood communities!