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Moshe-Mordechai van Zuiden
Psychology, Medicine, Science, Politics, Oppression, Integrity, Philosophy, Jews -- For those who like their news and truths frank and sharp

Distorted reporting of easier early detection of inherited genetic flaws

Dutch saying: voorkomen is beter dan genezen
Dutch saying: voorkomen is beter dan genezen

There are three sources for this misinformation. First of all, the scientific report has mistakes. Then the TA University website that reports the publication has (many) mistakes. And then every journalist (here, here, and here) is free to add her own mistakes to the mix.

The biggest flaw is that this is all written as propaganda, advertisement and not as neutral reporting of a scientific finding. It lacks every critical analysis and warning about drawing too large a conclusion. If you want to know what’s not so positive about the “great finding,” go look for it.

I understand that the University and the researchers need money and want fame but to sell this as scientific reporting is just dishonest. Another sign of this being an orchestrated campaign and not fair science reporting is that the article, the TAU website announcement and the articles in the Israeli press all appeared on the same day. Prefab writing.

A giant moral flaw of the whole reporting can be compared to explaining how to improve nuclear weapons while ignoring the moral side of them. Here is reported the means to get safer access to information that people will use to abort their pregnancies. In the Western world, parents want children later and fewer so they must be screened for perfection.

The University website article starts even off with “Every parent-to-be dreams of having a perfect baby.” Eugenics repromoted? The article doesn’t talk about deficient people or creatures unworthy of life, as the Nazis called them, but “flawed” is only semantically different. As a friend of mine with Softenon arms would say, You think I should have been aborted? (You think it’s nasty to bring this up? I think it’s nasty to leave it out.)

I’m not to judge people who decide to terminate their pregnancy (and I don’t want them shamed or bullied) but don’t call it a cure. I’m thinking about cruel cultures where they dispose of handicapped newborns at the doors of children’s homes  – also not my ideal. Obviously, the best test is done preventatively, before a couple decides to take dating to the next level.

The biggest misrepresentation of this news is already in the headlines. Some journalists report, together with the original article, that this detects disorders while others, together with the University website, claim that this detects mutations. It does neither. What does it detect?

It detects: if a parent has an obvious or hidden genetic flaw, if the baby will have that flaw and if it will be bothered by it or it will be hidden.

However, how prominent the symptoms will be can in most cases not be predicted. Not every person with Down Syndrome has the same potential. Not every sickness gets equally serious in all people. And we’re not even talking about people who have a mosaic – different DNA in some cells from others. Or about mistakes made by the doctors.

The reporters all say that this new method can also detect Down Syndrome but that is not inherited from the parents and the article doesn’t even discuss this or test this on the four babies!

NB: Mutations, spontaneous changes in the DNA so that it will differ from both parents, will not be detected with this method. Only stuff you inherit from your parents. So, forget about that perfect-baby story.

The website claims that detection will “predict mutations with 99% or higher accuracy, depending on the mutation type.” That’s the same as saying about a car repair shop that it has a “client satisfaction of 99% or higher, depending on the type of repair done.” That is misleading. If it has a satisfaction rate of 10% for changing the oil, it could still have been honest, because the 99% – it says clearly – depends on the type of work. But the whole statistical overkill is ridiculous anyway because this was tested on (yes!) 4 babies (never mind every reporter says 3).

Real reporting will say two accuracy numbers. What is the change of false positive (reported bad gene but all is OK) and what is the chance of false negative (reported all is OK but it turns out it’s not). This, of course, is absent here completely. But vital. Your baby has inherited your disease. How certain is that? A crucial question. Not “99% or higher.”

They call this type of test noninvasive but taking blood samples is still invasive, though less risky than taking genetic samples from the womb or placenta. Testing urine samples is noninvasive.

Any medical reporting that sounds too good to be true probably is.

About the Author
MM is a prolific and creative writer and thinker, previously a daily blog contributor to the TOI. He often makes his readers laugh, mad, or assume he's nuts—close to perfect blogging. As a frontier thinker, he sees things many don't yet. He's half a prophet. Half. Let's not exaggerate. He doesn't believe that people observe and think in a vacuum. He, therefore, wanted a broad bio that readers interested can track a bit what (lack of) backgrounds, experiences, and educations contribute to his visions. * This year, he will prioritize getting his unpublished books published rather than just blog posts. Next year, he hopes to focus on activism against human extinction. To find less-recent posts on a subject XXX among his over 1500 archived ones, go to the right-top corner of a Times of Israel page, click on the search icon and search "zuiden, XXX". One can find a second, wilder blog, to which one may subscribe, here: https://mmvanzuiden.wordpress.com/ or by clicking on the globe icon next to his picture on top. * Like most of his readers, he believes in being friendly, respectful, and loyal. However, if you think those are his absolute top priorities, you might end up disappointed. His first loyalty is to the truth. He will try to stay within the limits of democratic and Jewish law, but he won't lie to support opinions or people when don't deserve that. (Yet, we all make honest mistakes, which is just fine and does not justify losing support.) He admits that he sometimes exaggerates to make a point, which could have him come across as nasty, while in actuality, he's quite a lovely person to interact with. He holds - how Dutch - that a strong opinion doesn't imply intolerance of other views. * Sometimes he's misunderstood because his wide and diverse field of vision seldomly fits any specialist's box. But that's exactly what some love about him. He has written a lot about Psychology (including Sexuality and Abuse), Medicine (including physical immortality), Science (including basic statistics), Politics (Israel, the US, and the Netherlands, Activism - more than leftwing or rightwing, he hopes to highlight reality), Oppression and Liberation (intersectionally, for young people, the elderly, non-Whites, women, workers, Jews, LGBTQIA+, foreigners and anyone else who's dehumanized or exploited), Integrity, Philosophy, Jews (Judaism, Zionism, Holocaust and Jewish Liberation), the Climate Crisis, Ecology and Veganism, Affairs from the news, or the Torah Portion of the Week, or new insights that suddenly befell him. * Chronologically, his most influential teachers are his parents, Nico (natan) van Zuiden and Betty (beisye) Nieweg, Wim Kan, Mozart, Harvey Jackins, Marshal Rosenberg, Reb Shlomo Carlebach, and, lehavdil bein chayim lechayim, Rabbi Dr. Natan Lopes Cardozo, Rav Zev Leff, and Rav Meir Lubin. This short list doesn't mean to disrespect others who taught him a lot or a little. * He hopes that his words will inspire and inform, and disturb the comfortable and comfort the disturbed. He aims to bring a fresh perspective rather than harp on the obvious and familiar. When he can, he loves to write encyclopedic overviews. He doesn't expect his readers to agree. Rather, original minds should be disputed. In short, his main political positions are among others: anti-Trumpism, for Zionism, Intersectionality, non-violence, anti those who abuse democratic liberties, anti the fake ME peace process, for original-Orthodoxy, pro-Science, pro-Free Will, anti-blaming-the-victim, and for down-to-earth, classical optimism, and happiness. Read his blog on how he attempts to bridge any tensions between those ideas or fields. * He is a fetal survivor of the pharmaceutical industry (https://diethylstilbestrol.co.uk/studies/des-and-psychological-health/), born in 1953 to his parents who were Dutch-Jewish Holocaust survivors who met in the largest concentration camp in the Netherlands, Westerbork. He grew up a humble listener. It took him decades to become a speaker too, and decades more to admit to being a genius. But his humility was his to keep. And so was his honesty. Bullies and con artists almost instantaneously envy and hate him. He hopes to bring new things and not just preach to the choir. * He holds a BA in medicine (University of Amsterdam) – is half a doctor. He practices Re-evaluation Co-counseling since 1977, is not an official teacher anymore, and became a friendly, powerful therapist. He became a social activist, became religious, made Aliyah, and raised three wonderful kids. Previously, for decades, he was known to the Jerusalem Post readers as a frequent letter writer. For a couple of years, he was active in hasbara to the Dutch-speaking public. He wrote an unpublished tome about Jewish Free Will. He's a strict vegan since 2008. He's an Orthodox Jew but not a rabbi. * His writing has been made possible by an allowance for second-generation Holocaust survivors from the Netherlands. It has been his dream since he was 38 to try to make a difference by teaching through writing. He had three times 9-out-of-10 for Dutch at his high school finals but is spending his days communicating in English and Hebrew - how ironic. G-d must have a fine sense of humor. In case you wonder - yes, he is a bit dyslectic. If you're a native English speaker and wonder why you should read from people whose English is only their second language, consider the advantage of having an original peek outside of your cultural bubble. * To send any personal reaction to him, scroll to the top of the blog post and click Contact Me.
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