I started attending various webinars some time ago, like lots of people, and like lots of people, I also got a little webinar fatigue at times.

A great series continues to be organised by the National Academy of Medicine and the American Public Health Association in the US, looking into many topics such as the science of the virus, finding vaccines, health inequalities and so on.

Today’s session, on mitigating direct and indirect impacts in the coming months, was excellent for decisionmakers at all levels – also in the UK! – because it addressed a lot of practical aspects and many angles of the pandemic.

It mentioned the need to provide free wifi, talked about telehealth (telemedicine) and developments expected to take a decade suddenly being realised in a mere three weeks, about the complications food deserts pose, about the politicizing of the pandemic, about how to cope with emergencies such as hurricanes and related evacuations, how to remedy the impact the pandemic is having on non-Covid-related healthcare (such as people with heart attacks not seeking help out of fear of catching the virus), the healthcare clinics getting into financial difficulties as a result (as, I think, we saw earlier with those two doctors in California who owned a small chain of facilities and saw their turnover drop so dramatically that they resorted to unorthodox action), the challenge and need to communicate well and perhaps have ambassadors explain the purpose and reasoning behind social distancing, the massive impact social distancing has on the infection rate and the risk of people that people will no longer observe distancing when lockdowns are relaxed and developing a false sense of safety, and so on and so forth.

Here is a link for a model (simulator) that people can play with to explore the effects of lifting lockdowns: https://budgetmodel.wharton.upenn.edu/

The video recording of the webinar will be online soon, at covid19conversations.org:
https://covid19conversations.org/webinars/summer.

The slides have already been uploaded, but not all presenters used slides and the Q&A of course is not online yet either. I’ll post the unedited transcript below.

Continue reading →

People are currently focusing on Trump and his silly comments, but perhaps they should be focussing on Britain.

A few days ago, British newspaper The Guardian reported about a eugenics meeting that allegedly had been convened in secret, involving someone who has previously advocated child rape. This meeting is supposed to have taken place at University College London and white supremacists supposedly were present at this meeting. Continue reading →

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.

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.

This speaks for itself:
http://www.gosh.nhs.uk/news/latest-press-releases/statement-chairman-great-ormond-street-hospital-22-july-2017

This too:
http://us.cnn.com/2017/07/21/health/charlie-gard-brain-scan-court-bn/index.html

Essentially, you don’t. You avoid them as much as you can because in Britain, you must consider police your enemy. They are not on your side. They are on their own side.

(Note: Anything I say on this page won’t stop me from, say, buying donuts for random police officers when they’ve all been called back from leave and are working very long days out on the streets. I do my best to see them as individual people.)

The only good reason for going to a police station in Britain is when you need to do that to be able to make an insurance claim.

Police in Britain stopped investigating crimes against individuals at least 10 years ago because they lack the resources to do so. The only crime against an individual that they are still bound to look into is when that individual has been murdered or if the individual is a supermarket owner or the like they like and someone has stolen a sandwich because he or she was hungry and was, say, caught red-handed or recorded on CCTV.

Other than that, forget it. That does not have to leave you stranded in all cases in which you’d normally expect to be able to get assistance from the police officers whose salaries you pay for through your council tax, after all.

Below are some tips, first for if you are a crime victim and second for if police are targeting you, for instance, because you are a crime victim.

Here is the GOLDEN RULE:

If police officers knock on your door, never ever open the door. Under no circumstances.

(You can still talk with them through the closed door, if you feel that it’s useful or required.)

1. Are you the victim of a crime?

Unless you need to do this for the sake of an insurance claim, do not go to the police. If you go to the police, the officers may tell you that they will use the information you give them as intelligence (though they won’t tell you that they are more likely to use it against you than against the perpetrator of the crime(s) you are reporting).

In almost all cases, they will also tell you to go to your council (civic offices) and to your GP. Don’t take it personally when they do this, even though it may sound like they are suggesting that you need mental health assistance. (After all, how on earth can a GP help solve a burglary, for instance?) They say this to just about everyone all over the country. It’s nothing personal; it‘s merely national policy.

You can investigate and try to stop crimes having been or being perpetrated against you but you have to proceed very carefully.

• What you need to do first of all is print several copies of the Protection from Harassment Act 1997. Tuck one away in each of your bags or suit pockets.
• Next, you write a letter to your local MP and any other politicians and/or journalists worth contacting. You explain to them what happened or is happening (the crime), in no more than one or two sentences, such as “My home was broken into” or “My daughter is being stalked. This has been going on for two years and last week the stalker broke into her home”. Then you write that you “will be approaching persons and taking actions for the purposes of preventing or detecting crime, pursuant to and in compliance with the Protection from Harassment Act 1997, Section 1, subsection 3, sub a.” and that you are sending this letter to him or her for his or her information. Send this letter or these letters by Special Delivery. Yes, that will cost you a few bucks but it’s worth it.
• If the MP or anyone else you wrote to then asks or tells you to go to the police, ask the person in question to come with you.
• Use Word or any other program to type up the following text: “Pursuant to and in compliance with the Protection from Harassment Act 1997, Section 1, subsection 3, sub a, I am approaching you for the purposes of preventing or detecting crime.”
• Print several copies of that text and always have them with you during your crime investigation. Before you say anything else, say this and hand the printout to anyone you want to speak with in relation to the crime in question.
• Also begin all your e-mails with that sentence if the e-mail is sent for the purposes of preventing or detecting crime.
• Remain reasonable at all times. That means, do not behave as if you are a police officer, do not get rude and do not lose your temper. You can certainly be firm. You are standing up for your rights. That is perfectly normal in many other countries and it’s a cry and shame that police in Britain don’t help you protect yours.
• Never undertake any of your crime investigation activities on your own, but always ensure that you have at least two witnesses, not from your family, but perhaps a colleague from work, a fellow member of a sports club you belong to or a neighbour or a client.
• If you do go to police, tell them as little as possible. They will use anything you report to them as “intelligence” and while they may inform you of that, what they won’t do is let you know that they may well use any information you give them against you. Police officers may act very friendly and reassuring, and talk about the action they will take, but when they do, they are usually just lying to you, unfortunately.
• The Protection from Harassment Act 1997, Section 1, subsection 3, sub b also means that it is very good (essential) to know the nature of the crime you are investigating, in legal terms. Look up which law applies to what happened, and why what someone did or does was or is a crime according to the law. You can go to the CAB or any other advice organisation, make some calls, see solicitors for a free half-hour consultation, drop in on a law clinic from your local law school and of course research it online and in books.

2. Are you being targeted by police?

British police officers these days seem to go after just about any person that they perceive as easy prey for their arrest (and prosecution) records and whose name and address they have. This could be someone who is probably poor or lower-class, someone who they suspect has a mental health problem and also someone who lives on his or her own or will likely only have kids in the house. So that there won’t be a partner who says “wait a minute!” and they only have to deal with one adult who police officers think will be intimated. Police officers know very well what effect they have on normal citizens and they exploit it when it serves them.

They also are more likely to go after people they don’t like, such as people who report serious crimes and are inexperienced enough to keep asking police officers what they are doing about it, particularly if the person lives on his or her own or will likely have only kids at home.

The problem with reporting a crime is that in the process, you give police officers a lot of information about yourself. They have your name and address now and know what you look like. By contrast, they very likely do not know the identity of the person who committed the crime or is committing the crimes you are reporting. They do now know also some of your personal circumstances, such as that you just broke off your relationship, got fired, just started a new job, whether you rent or own your home and things like that.

If you become the victim of a crime, no matter what cause of action you take (go to the police and/or investigate yourself), it raises the probability that police will start targeting you.

Under no circumstances report a crime and then keep calling to ask what the police officers are doing about it, even if a police officer has told you to do so. (Don’t investigate and report on your investigations either, not even if they have specifically asked you to do so.) All of this is bound to annoy them so much that you may well find them knocking on your door on Sunday morning at 7 am, when you innocently open the door and then find the door slammed into your face and yourself crushed onto the floor and arrested, your kids watching scared and helpless.

Unfortunately, that is the reality in Britain. It happened to Michael Doherty, for instance.

If you’re a woman, it may be more likely that police officers will call the local mental health hospital behind your back and suggest that you are mentally unwell. They may also pay your employer a visit and anyone else who suggesting to that you are not well in the head may disadvantage you.

That too is the reality of Britain today.

Do not open the door if police officers (are targeting you and) knock on your door. You do not have to open the door if police officers knock on your door, no matter what they tell you (with very few exceptions and in those cases, it makes no difference whether you open the door or not, so, don’t). That’s right.

Police officers can sound very convincing when they tell you all sorts of bullshit. Some of them are genuinely convinced that they know the law because they have this law book specifically for police in which they can look things up. If it says anything that does not suit them but would be to your advantage, they won’t tell you that. It will almost never come back to bite them anyway. In practice, police officers in Britain rarely have to adhere to the law, let alone administer it appropriately.

If you ever get arrested, don’t trust whoever shows up as duty solicitor either. He or she will not be interested in your rights. He or she will either want to get out of the police station as soon as possible or milk the circumstances for whatever reason. Of course, there are exceptions – GOOD and HONEST lawyers do exist; in fact, a few of your personal heroes may be lawyers – but under no circumstances assume that a duty solicitor will look out for you.

If you are investigating crime committed or being committed, someone may still call the police and say that you are harassing him or her. This is more likely if that person is the person who committed or has committed the crimes you are investigating, of course, because he or she knows that your powers are nowhere near those of police officers and may have more experience with police than you. He or she will want to make you go away and complaining about you is a possible approach to that.

That is particularly why you need to know what the Protection from Harassment Act 1997, Section 1, subsection 3, sub a says so that you can say that and maybe even show the printout of that law. Do not count on a duty solicitor to do that for you!

The fact that you are investigating crime on your own already indicates that you are not a person in power, after all. It makes you easily dismissible in the eyes of the police and in the eyes of the duty solicitor. Stand your ground. Don’t let them walk all over you. (You were doing what police officers should be doing. It is not your fault that, as a rule, they no longer deal with crimes committed against individuals these days.)

Also, you have informed several persons such as for example your MP about what you were going to do and you have witnesses.

Last but not least, a bit of a warning. Shana Grice, a young woman who reported being stalked to police was accused by police of wasting police time police (and fined, I believe) before her stalker killed her. There are other women in Britain who were killed by their stalkers, and they too were often not taken seriously by police.

I know a woman who was in similar circumstances, in the Netherlands. Her ex-boyfriend started stalking her and strangled her almost to death one day. In stark contrast to British police, Dutch police did not dismiss her but were very helpful. They advised her to relocate to a town in which she did not know anyone so that her ex was least likely to look for her there.

She took the advice, even though it meant breaking off her Master’s. She moved to a town at quite a distance from where she used to be and also from where her family was, enrolled in a lower-level educational program, then enrolled in another Master’s and after that started a PhD track. She got that PhD and she’s also a mother now.

(He eventually tracked her down in her new town too, but it took him a long time, and by then, he was less angry. One of her house mates or neighbors found him on the doorstep one day, and convinced him to go back and leave the woman alone.)

If you are being stalked in a way that seriously worries you, do not investigate or try to stop it by yourself (and certainly don’t bother reporting it to British police, also because they are likely to inform your stalker of everything you told police, whether on purpose of accidentally). Do what Dutch police advised this young Dutchwoman.

Hopefully, you’ll never need to know any of the above.

If you do use any of the above, and you end up killed, stabbed, bullied, hacked, arrested or anything else that you would have preferred to avoid, then note that you cannot hold me liable for any of that. I am not a lawyer, certainly not within this context, and I am not in a position to shield you from all risk.

Like the woman I mentioned above – no, it wasn’t me; it concerns a much younger woman whose acquaintance I made when she was working on her PhD – I too have only very positive experiences with Dutch police, even in sensitive circumstances that could have easily created friction and for which the officers in question had no training. Hats off!

I have worked with Dutch police in a neighbourhood crime prevention initiative. I also have positive experiences with American police, but race riots broke out in the US city where I used to live only shortly after I left. As we all know, American police has its troubles too because there had been too many incidents in which innocent black persons were killed by police officers in that city.

I think such incidents are often the result of irrational fears on the side of the police officers who often work under a lot of tension. I have personally witnessed in the US that when I had to call police in highly suspicious circumstances, they seemed much more scared and nervous than I was (presumably because I was living in a Florida neighbourhood that didn’t have a good reputation at the time). They were also looking out for my safety extremely well and I noticed that with gratitude.

I wish I could be more positive about British police.

I post the following from the work of Dr Lorraine Sheridan, as this can be vital information to have.

Typology 4: Sadistic stalking (12.9%)

Characteristics

· victim is an obsessive target of the offender, and who’s life is seen as quarry and prey (incremental orientation)
· victim selection criteria is primarily rooted in the victim being:

(i) someone worthy of spoiling, i.e. someone who is perceived by the stalker at the commencement as being: – happy – ‘good’ – stable – content and
(ii) lacking in the victim’s perception any just rationale as to why she was targeted

· initial low level acquaintance

 · apparently benign initially but unlike infatuation harassment the means of intervention tend to have negative orientation designed to disconcert, unnerve, and ergo take power away from the victim

– notes left in victim’s locked car in order to unsettle target (cf. billet-doux of infatuated harassment)
– subtle evidence being left of having been in contact with the victim’s personal items e.g. rifled underwear drawer, re-ordering/removal of private papers, cigarette ends left in ash trays, toilet having been used etc.
– ‘helping’ mend victims car that stalker had previously disabled · thereafter progressive escalation of control over all aspects (i.e. social, historical, professional, financial, physical) of the victim’s life

· offender gratification is rooted in the desire to extract evidence of the victim’s powerlessness with inverse implications for his power => sadism
· additional implication => self-perpetuating in desire to hone down relentlessly on individual victim(s)
· emotional coldness, deliberateness and psychopathy (cf. the heated nature of ex-partner harassment)
· tended to have a history of stalking behaviour and the controlling of others · stalker tended to broaden out targets to family and friends in a bid to isolate the victim and further enhance his control
· communications tended to be a blend of loving and threatening (not hate) designed to de-stabilise and confuse the victim
· threats were either overt (“We’re going to die together”) or subtle (delivery of dead roses)
· stalker could be highly dangerous

– in particular with psychological violence geared to the controlling of the victim with fear, loss of privacy and the curtailment of her social world

· physical violence was also entirely possible

– especially by means which undermine the victim’s confidence in matters normally taken for granted e.g. disabling brake cables, disarming safety equipment, cutting power off

· sexual content of communications was aimed primarily to intimidate through the victim’s humiliation, disgust and general undermining of self-esteem
· the older the offender, the more likely he would have enacted sadistic stalking before and would not be likely to offend after 40 years of age if not engaged in such stalking before
· victim was likely to be re-visited after a seeming hiatus

Case management implications

· should be taken very seriously
· acknowledge from outset that the stalker activity will be very difficult to eradicate
· acknowledge that there is no point whatsoever in appealing to the offender – indeed will exacerbate the problem
· never believe any assurances, alternative versions of events etc. which are given by the offender
· however, record them for use in legal action later
· the victim should be given as much understanding and support as can be made available
· the victim should not be given false or unrealistic assurance or guarantees that s/he will be protected
· the victim should carefully consider relocation. Geographical emphasis being less on distance per se, and more on where the offender is least able to find the victim
· the police should have in mind that the sadistic stalker will be likely to:

(i) carefully construct and calculate their activity to simultaneously minimise the risk of intervention by authorities while retaining maximum impact on victim,
(ii) be almost impervious to intervention since the overcoming of obstacles provides
(iii) new  and potent means of demonstrating the victim’s powerlessness (ergo self-perpetuating) and,
(iiii) if jailed will continue both personally and vicariously with the use of a network.

http://www.le.ac.uk/press/ebulletin/archive/speaker_sheridan.html

http://www.le.ac.uk/ebulletin-archive/ebulletin/features/2000-2009/2007/07/nparticle.2007-07-17.html

http://news.bbc.co.uk/1/hi/uk/6300291.stm

http://www.le.ac.uk/press/stalkingsurvey.htm

Writing the first version of my essay “We need to talk about this” – the updated 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.

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.

Ouch.

I ran into the story a while ago, and couldn’t find too much information about it back then. However, the parents have just been turned down by the next court and now apparently plan to take the case to the Supreme Court. That’s resulted in more attention for the story, with more background.

Here are two places where you can read more about the case if you’re not familiar with it:
http://www.bbc.co.uk/news/uk-england-london-40047485

https://researchingreform.net/2017/04/12/london-live-interviews-researching-reform-on-charlie-gard/

http://www.bailii.org/cgi-bin/format.cgi?doc=/ew/cases/EWHC/Fam/2017/972.html

In the online discussions, I see something that I also recently mentioned in an essay I wrote and I feel the need to say something about that. (I have also submitted a comment elsewhere.)

Yes, it is true that the British medical profession can be extremely arrogant. As a Dutchwoman who previously lived in the US and is now based in Britain (in Ashya King’s city, I might add), I too feel that the medical profession generally still has that ridiculously old-fashioned god status in Britain. I’ve for instance been ridiculed by an ophthalmologist for asking about possible side effects of a medication, only to find that it did cause serious problems for me. (Thankfully, we have the internet now, which can help us solve such relatively minor problems and bypass physicians who don’t like assisting emancipated patients.) Some people have mentioned Ashya King’s case within this context.

Having said that, Charlie Gard’s case – heart-breaking and difficult – also has a strong element of the opposite. We are now in an era in which doctors are increasingly often perceived as “playing God” when they do NOT do everything in their power to prolong a baby or an adult’s life artificially, no matter how high the cost to the individual in question.

Charlie Gard’s case is not comparable with Ashya King’s case.

Charlie was born with a condition that normally means the infant won’t live very long. I understand that of the few children with his condition, his situation is the worst. Ouch. One can ask whom prolonging Charlie’s life benefits, Charlie or his parents. This will sound incredibly harsh to many and I understand that. It is okay to be very angry with me for that comment.

(I understand, really. I grew up with illnesses and deaths in my very close surroundings; it concerned my mother, one of her sisters and one of her brothers. They died of different kinds of cancer. My mother suffered greatly and for many years, after having been misdiagnosed twice. My youngest sister almost died after she was misdiagnosed when she was 4 or 5. She ended up in critical condition and had to be cooled with ice to keep her fever alone from killing her.) If it hadn’t been for the persistence of my dad, she would never have had the chance to develop into the successful business owner she is today. So, yes, I do know about losing people and wanting to hold on to them.)

On the other hand, allowing Charlie the experimental treatment in the US could yield very important information that may not benefit Charlie but could benefit future infants with mitochondrial DNA depletion syndrome or even other conditions. Could that be worth it? Hard to say.

What would Charlie want? Can you place yourself in Charlie’s situation for even a moment?

Ashya King, by contrast, was a healthy and much older kid who developed a brain tumor. Even with the traditional treatment, Ashya had a fighting chance and treating Ashya as well as possible was certainly going to benefit Ashya (even though there is never a 100% guarantee).

And it has.

One of our problems is that we badly need global regulations for all kinds of medical situations, regulations that people from all sorts of backgrounds all over the world can agree with. The lack of it currently not only causes medical tourism but also the kind of heartbreak we now see in the Charlie Gard case.

If I put myself in the parents’ shoes, I say that most of the hurt and upset for them is currently coming from the legal process. The uncertainty. Even possibly the knowledge that every day they spend in court is one day on which he is not getting the experimental treatment in the US. Unassisted, nature would have already allowed Charlie to cross the rainbow bridge and be at peace and the parents could have had a more normal mourning process.

Is Charlie at peace now? Is he not? How can we know?

It might be possible to avoid this kind of agony if we had much more clarity about what to do to limit harm to such a child as much as possible. Such regulations will have to be a compromise, obviously, and can never avoid heartbreak (but heartbreak is also a normal part of life; life does not come with guarantees and the losses make us cherish what we have).

Conditions like Charlie Gard’s also play a role in the new eugenics, currently particularly in the selection of embryos for IVF procedures, a rapidly growing practice, and soon in the creation of designer babies. It is an incredibly difficult topic that is screaming for attention. So I just wrote a rather provocative essay on it, in a hurry. It is called “We need to talk about this” (the second edition is already in the works) and includes a definition of what constitutes a life not worth living. I have based it on the principle of humanity, namely that every human being has the right to a life in dignity. During the writing of that essay, I grew very depressed a few times, because it is such a hard and dark topic. But we really do need to talk about this, sooner rather than later.

I wish the judges and the parents wisdom and strength and little Charlie lots of eternal sunshine of every possible kind.