player. play. play play. welcome to the but is the game here one deep w. . we have plenty to talk about and. let's just saw the coverage live 3 more proof. that little we have heard let's have a look at so many of them at least look so you don't want to miss. loosely d.w.t. i. believe.

the ice bucket challenge in 2014 people all over the world were pouring ice water over their heads in a bid to focus more medical research on the rare motor neuron disease a less lethal they posted the videos on social networks and raised millions in private donations scientists took no they'd seen how their laboratories and the public could be just a click apart. what would you rather we did next tuesday contests i think we can now invent new drugs faster if in the kind i believe that they so much more than we can deal. with why public support medical researchers can tackle diseases at the pharmaceutical industry overlooks. leap. live. in the land of social media cats rule one

of their stars is lil bub she looks a bit unique but she was exactly what 2 molecular biologist from berlin were searching for. now for the 1st time will be able to understand all the secrets. even you know what. scientists daniel d. bring him in a jar a look here at this work for the max planck institute for molecular genetics. and in. one night i was on the internet on going this cat documentary came up in my recommendation and since one of the cats they showed was a little bug and they said she has 6 toes which was interesting to me but i've seen that before and then they said the cat's also small because she's got weird bones which means this cat has both a limb and the bone malformation it's i thought this can't be happening it doesn't come. this is precisely the 2 scientists specialty

they deal with hereditary diseases. and it's. the next day i went to daria and said you have to see this cat you won't believe what she's got of we knew that there are genetic mutations that cause limit from actions and also mutations that cause bone malformations but i've never seen a combination of the 2 so i figured the best thing to do was to sequence that which is our specialty it was totally amazing that something we normally do in our institute which makes most of our friends yawn was related to something that interests millions of people and you mentioned. they set out to decipher the famous catch genome but laboratory analysis is expensive so the 2 researchers moved to make use of little bubs high profile in the tiny town of bloomington indiana. with over 200000 you tube subscribers and 3000000 likes on facebook the feline

reaches a vast number of people. social celebrity we wanted to do a broad not only in both us but kind of get engaged also the fans or people like tom i mean that is the in understanding what is behind the said time features that neither of us. will bubs own or microsoft's he was thrilled for him his cat stardom was never an end in itself. when she started getting favors i mean it's a pretty strict rules we're hearing if we're going to do this that there should be some sort of positive message attach where there is are you know reached out. as 3 exciting. the berlin researchers launched a crowdfunding campaign in 2015 crowdfunding draws on the vast number of people using the internet.

the caps fans were able to donate small sums to the crowdfunding platform the scientists needed a total of $6500.00 to cover part of the research costs. but people donated even more and in the end it brought in over $8200.00. now the real research could begin. so normally what happens you know because. you basically work in the lot for i think 2 or 3 years and then you keep your results and they're not the same then you basically release all your results we can reform the 2nd belief in experience because 1st you can get engaged socially with the people that theme that actually your research interest and then doing the entire process you can communicate with them. the money for a little bubs genome decryption came together within a month mike sent a sample of the cats blood to berlin abraham and his colleagues captured the most.

meant for the donors. to find anywhere sequencing you know. staying in touch with the public was a completely new task for the researchers suddenly they themselves were the focus of an audience but it also gave them an opportunity to make science more transparent. we are going to try and do on this done follow how they do you know functional and hollow and durations in the genome can lead to human disease. the analysis found that little club was suffering from an unusual accumulation of genetic mutations. osteo patro cysts a rare bone disease where the bone tissue becomes considerably more dense was the most obvious she also had polly dr lee hands her 6 claws. as humans can be born with surplus fingers and toes as well little bugs genome could help

understand these rare hereditary diseases better in the future. as it comes on crowd funding could be a good way to enable research into a particular rare disease because that doesn't happen a lot otherwise funding agencies give a lot of money to medical research but it's often difficult to get money for rare diseases off me so i'm for. crowd funding as a way of enabling research that might otherwise not happen. but i'll show you that the bus house he's home edition that nobody has discovered before in the study of the said machine gun. information that we had not seen previously before. all those disarranging. new forms of research funding are particularly needed when no one else is investing

. hardly anyone knows this better than the people that access the alliance of chronic rare diseases we're meeting christina moment loss. with the voice of those affected by red diseases. that affect some 4000000 people in germany alone but few of them suffer from the same rare disease. this is in american terms it's normally a few 1000 people but it can also be only a handful of patients worldwide get. patients like josefina schultz who's 10 years old today she was born with a swellings and a heart defect. her parents went from doctor to doctor but no one to give them an answer it took 18 months to get a diagnosis josefina has a rare genetic disorder williams syndrome but she still has a normal life expectancy for not is it if you're affected by red izzy's it means

1st and foremost that you have to search parents tell us what an enormous burden it is for them to know that something is wrong with their child and not get an answer as to what it means and where it leads the way with words when. the pharmaceutical industry focuses on the development of therapies for common diseases secrets from the association of research based pharmaceutical companies says this is the right approach. for now nobody is responsible for basic research we have a total of $30000.00 diseases 628000 of them are rare in view of that i think it's obvious that the pharmaceutical industry cannot tackle all diseases at the same time. con research spending by governments in the pharmaceutical sector has been rising for years there are a must to achieve the e.u.'s lisbon target of 3 percent of gross domestic product germany austria and switzerland together and. asked about 120000000000 euros in

research and development every year. however those affected by rare diseases do not automatically benefit the pharmaceutical industry applies a simple formula. you know if you history class how common or how rare is the disease. is there any basic research that shows how it could be treated. or can and can we expect research into it to pay off at some point. but i think. i was taught. many people affected by rare diseases the hope for new drugs for gene therapy yes but it's a complex process scientists must 1st find and develop an active substance then they tested on animals so as not to endanger humans. these studies alone often take years. and then when all the trials have gone well if you go into

clinical trials that is into research with actual patients initially healthy volunteers will be thinking. of around $10000.00 active substances evaluated in pre-clinical research only about 5 actually get as far as clinical trials active ingredients are tested in 3 phases often on many thousands of patients and the drug will only be approved if the clinical trial goes off without a hitch despite the whole thing takes about 10 to 13 years and cost several $100000000.00 you want to know pharmaceutical companies prefer to invest in projects with high profit expectations rare diseases are not included they're often complex and unprofitable christian among us see the challenge it isn't the same congo we know that red is eason's can only be treated in an interdisciplinary and cross sectoral way. that means networking is crucial on this the digital revenue.

of course supports us on this. and digital techniques are incredibly good tools for his school to see his middle. but where the market shows no interest the state and our society can step in with donations if necessary. it worked with the ice bucket challenge at least $140000000.00 in donations were collected worldwide and a year later the researchers could actually report a success they were able to replace the damaged protein ls with a synthetic one in the laboratory thus preventing the death of affected cells but still dozens of the new cars on the we have to be aware that this probably won't happen again in that way and we also have to be aware that the people who made the donations didn't necessarily learn a lot about the disease but learned carved by only enthusiastic celebrities tipping ice cold water over their heads and the following it attracted you. is i.

wasn't to follow what. how big does the crowd have to be. many followers does it take to tackle the thousands of rare diseases why does the money. when we have the tools to help. romania or tease founded the global aids organization rare for nomics in 2012. it helps patients with rare diseases to finance genome analysis. yes mean fun for a queen and her brother are 2 of them. d.n.a. analysis showed that the siblings had different gene defects that required completely different therapies. it is very important to people i mean really has over 80 percent agree diseases are known to be genetic in origin. comprehensive health insurance is

a luxury in the us some families have gone bankrupt trying to treat rare diseases. i work directly with families to actually talk to the insurance companies to act ask for insurance coverage and every time you're early on by. oh it's experimental this experimental test so we can't cover it and we started helping any families that we would offer that as an option if they could not for the test so we they're also trying to do insurance coverage and that didn't work we say well we'll help you have funding you're willing to do that. mix a company's patients from the crowdfunding campaign through analysis of the results to possible therapies. i've seen just in the past i would say for years alone there has been a big increase in interest in rare diseases and in pharma the more research that is

done the more findings you know whole new mutations associated with disease the more people will be interested in. networking and crowdfunding are useful tools for people suffering from rare diseases. but there's also a need for political oversight. and it's incentives have now been created at the e.u. level to encourage the pharmaceutical industry to tackle red diseases and also to see the appeal in developing drugs for them to come and it's because. these incentives for the pharmaceutical industry include simplified approval procedures and better patent protection at the same time the costs of d.n.a. analysis have fallen dramatically when the human genome project was launched in 1900 it was the 1st time that all 3000000000 base pairs of the human genome have been identified and mapped. the project took 13 hears and cost $3000000000.00

today you can have your genome sequenced in a single day for about $1000.00 and the price continues to fall. the highest the drop in the cost of sequencing means that you can suddenly do anything you can think to do. the fortunate come. but what impact does having to 1st court the broad public via the internet have on research. what sort of projects stand a chance. were flying to london where british researchers were the 1st to lay bare the impact of l.s.d. on the brain using modern scans. the proposal was an online crowd pleaser instead of the target of $25000.00 pounds the crowdfunding campaign brought in more than twice as much. i guys you know.

david knott is a psychiatrist at imperial college in london by steady brain out of the influence of l.s.d. he wanted to create the 1st precise imaging study of the drug's effects for medical purposes his priority is the treatment of depression. depression is the largest schools of disability in the western world including germany because the clinton's not very good condition starts young continues all one's life and so it's very expensive but we've made so little progress in the last 20 years that most pharmaceutical companies have given up and that means we've is now up to us the scientists and technicians to take up the challenge. not is focusing his research on psychoactive substances it's a difficult but he thinks promising field of research. classic antidepressants like

prozac they increase a return in the brain and they protection from stress they dampen down the stress responses so eventually you know you can cope with the stress of life and the psychedelic play kind of reset the brain so that you can overcome the stress rather than protect yourself against. the w.h.o. classified l.s.d. is highly dangerous which means no public funding for research into the substance is available. it is not a medicine there's only one class and that class is the most harmful and once you're in that class it's very hard to work with. the money from the crowd funding camp david complete his imaging study subjects were given l.s.d. and put into the brain scanner with unexpected results. we found exactly the opposite of what we predicted we thought people having a trip on magic mushrooms or as the seeing all sorts of wonderful lights images you

know they're traveling through space and going to magic mountains and things we thought their brain will be activated it's not switched off. because these drugs disconnect you from the outside world you're seeing the inner workings of your mind rather than the constraints is put on your mind. and that's why they work in depression because they switch off the circuit of depression to people write to me every day almost saying can i have the treatment i say no because we're not allowed to give you the treatment because it's illegal to. further studies are needed but the british medical research council which is responsible for research funding is still skeptical money from the state for research into class a drugs it's unthinkable. there are 2 kinds of harms a drug can do there's a harm the drug can do to the people who use it and the harm that drugs can do to society as a result of people using it. and when you look at societal harms way way above

everything else at the top there and then. psychedelics have no societal harm they may even have benefit because they have different. research against the mainstream is exhausting because state support programs deliberately and quite rightly contain control mechanisms ethics committees constantly reassess the benefits of the general public and the dangerous of the test subjects but david not thinks crowdfunding is also important for another reason. he's part of a bigger profile of communicating science and also communicating the obstructions to science that's actually critical because we're in this stupid position of having banned drugs for 50 years because the traditional media refuse to think differently in social media you've got much more opportunities to communicate the truth to people so so i see crowdfunding as part of

a larger public. communication strategy where we get people to understand that their families are being disadvantaged because the law doesn't allow the use of it but. if the state of the pharmaceutical industry don't support it can the crowd really step in and even impact health policy will medical research become like grassroots democracy in the future. where it seems to be more easy to mobilize people for the rights research was a bit different in my case. we're visiting christopher rom and stockholm he's also been trying to obtain funding for his research topic 1st from conventional bodies then through crowd funding he's a psychiatrist at carolyn's institute and wants to study the treatment of pedophilia. tried the traditional way. many many times but i was declined all the time there are people reading this application maybe some of them

have personal opinions on the topic there is not in my backyard syndrome around this. there are issues nobody wants to know about although there's a real need for action. the overarching aim of the study is to find ways of reducing the number of child sexual abuse is by establishing an evidence based scientifically proved. method to treat adult men with pedophilia disorder some studies indicate. adult population one to 3 percent have sexual fantasies a moment children almost one in 10 girls. sexual abuse during childhood and one in 20 boys and in almost 50 percent of the cases it is done by someone with a pedophile it is a wonder. around wants to find out whether a prostate cancer drug can also preventative lee help pedophiles by inhibiting the

body's own to start their own production. looked on the brain functions behind these risk factors hypersexuality in the when buffy and disturb self-regulation and i saw all these brain functions had in common that they were partly regulated by testosterone in a way that if you remove the 1st or strong then it would have a beneficial effect on the risk factors after being refused government funding in sweden christopher started a crowd funding campaign on the english web page crowd science in 2016 with everything a campaign like this needs. but i had to find something to give in return in my case of. early results to get to know of the results of the study early and to maybe come here and visit. postcards and t. shirts and think. the outcome was devastating crowd showed little interest and

not even 2500 pounds were raised. 38000. but then when i counted the money when i looked on their count. most nothing came in if you sponsor this kind of project maybe people think that you have some kind of personal link to the problem to something that you have been the victim yourself or something like that and most people choose to not because of that i think. ron has now turned his back on crowd funding for the time being he's recognized that science is facing new challenges. as a researcher you must change your thinking you must you know convince the layman the. people are not involved in research at all. it's clear society should not leave decisions to the general public exclusively anymore than

it should to the pharmaceutical industry. some startups are taking a different approach they don't involve the crowd as private donors for a good idea but as participants in an up and coming company. our research leads us to a christian sits in berlin his company is developing a therapy for aids patients. it's not really a self-starter because public perception of aids is that it's now less threatening . but that's wrong the virus is adaptability means it can quickly become resistant to existing drugs. mice medicament and most drugs in the current standard therapy target the building blocks of the virus

itself. our substance attacks the building blocks of the human cell on which the virus inevitably depends. because if you shut down those building blocks the virus can't replicate the bush then it comes feels many people. more than 200 donors have so far invested over 300000 euro in christians it's a start up. and they're hoping to profit from the sale of the company's shares the risk is high but this sort of crowd investment spreads it over a wide investor base. some einen on the one hand it's very difficult to attract larger investors during the early phase which is where we are still. but you do get the chance to let people know that while treatment for hiv is good the virus is still a problem in the uk and globally in the us today. but the crowd doesn't just

provide funding for medical research many projects also call for the bundled knowledge from a community of researchers. really i am not of that. i mean just. go any. good morning. or. worry in mumbai india mumbai's location and population density make it a stronghold for transmittable diseases the monsoon in june also brings in mosquitoes 60 percent of the city consists of slums the much loved breeding. ground for the mosquito genius enough elise. the females transmit parasites one sucking blood which causes malaria.

the national chemistry laboratory. this is where it. is doing research into anti-malaria drugs. definitely is not. population in fact. even in settings like. for example in mumbai in india. so every year after the monsoon rains here you have. patients coming into hospital. with $200000000.00 new infections worldwide every year malaria is hardly a rare disease nevertheless the development of an effect if drug has been sluggish . diseases like you know i think once you become obese then. takes you

along and there is a lot of money to be made by. companies because they can see an extended period of time with infectious disease. especially for. you know just 2 weeks treatment. the scientists have to deal with the pathogens mutations despite extensive research the fight against. different pathogens from region to region genetic differences in people affected co-infections with other germs and increasing resistance have all conspired to slow the development of a reliable the. seen against malaria. the swiss foundation medicines for malaria venture supports scientists in india and other affected countries working with scientists from countries that actually have

malaria is really important you always hear in the news that you know there are new mutants coming up with new or even new species arriving but also just to understand is really important. the m.v. foundation distributes important raw materials from malaria research in the form of a malaria kit to dozens of research teams around the world the only condition is that the results must be freely accessible to all similar to open source software that anyone can work on. and everything must remain patent free so that future drugs do not become unnecessarily expensive. this millennium bugs has 400 molecules some of them have the potential to become drugs. but a lot of science needs to get done at the fundamental level to understand how this money goes for what they're getting so in love b.

is willing to give this money goes to immediate search or anywhere in the world free of cost as long as they promise to shab the data which comes out of their search so $1.00 of the things that a lot of the open source work has done is bring the whole community together with common standards and common lucian. in this case infrastructure is being created in affected countries that will allow the research to go ahead independently of endowment funds. the scientists in who may now produce the expensive molecules themselves which also accelerates malaria research. a colleague from the singapore university of technology is here on a visit. his research also benefits from the results from india because he can use them without any restrictions so one of the things we try to do we are looking at chemical libraries and i didn't fake molecules that can block any mission of the

part of it and then look at what in the part of it or in that cell that are affected by these small molecules that line of research using that sort of molecules are doing in my laboratory the only possible because of that open access library made available to a monkey. today the results are spreading faster than the pathogen itself. shanmugam is confident. we have discovered these 2 sets of molecules within the malaria box and once we understand how they work what is their target and then we will test whether better states have the ability to become that assistant to these. it's now completely normal for the research team to exchange results with colleagues all over the world . it's a huge cultural change. one of the deep questions is how you train the

next generation of leaders in drug discovery for neglected diseases from the countries themselves so there are very very few groups in the world so you know africa in south america. in southeast asia or in india who where you have a leading international scientists working on drug discovery so anything we can do in these projects are very good for that. the fact that the results of networked research are open to all accelerates the increase in knowledge enormously. sometimes patents block independent development. i linda grant works for the american parcel miss foundation its mission is to bring research neglected by industry to market maturity male contraceptives for example our founder languorous never was very impressed. with that this.

is a device using a job and actually emptying the rights to the outside. the cost $90000.00 euro. vessel shell is a non-hormonal polymer gel that specifically blocks the vast difference and prevents sperm transportation for about 10 years. the principle is comparable to sterilization can be easily reversed because a 2nd injection can just rinse the gel out again. it's been tested successfully on humans in india for years however the w.h.o. raised concerns and prevented western countries from participating in the study the foundation is now aiming to change that. and that's our need to.

get it to market. it's a horrible quality it. is not. the devil which you know estimates that there are $80000000.00 and want to pregnancies every year but the development of contraceptive methods for men has stalled and not only because of male concerns about the side effects of hormone treatments pharmaceuticals and. in this area and they are now i believe by about. now products they feel that if they develop now that may compete with the samples that they are doing. the parts of his foundation is now looking for donors to bring the contraceptive to the market well we're seeking is who are socially minded individual investors who may want you know some kind of return.

how badly are more interested in the social good. we also would. like to come in and finish something so we need to be able to use that 1st as a big project in regards to maybe get into. the study in india will continue in parallel however the product has hardly any chance of entering the western market from there getting approval for new drugs in europe and north america is a very complicated procedure. intentionally so to protect their respective markets . networking is also an advantage in commercial medical research and has made a new type of pharmaceutical company possible one that isn't large and slow but as

many small active cells around the globe currently there are a lot of startups like this so we went to look at one. particular group to think about. how you're right jonathan montague is the managing director of hotspot therapeutics a boston based company the chemist himself lives in berlin and directs employees all over the world from here. by hawks paul designing. what we say at hot spot the sun never sets. and that means our experiments are going on around the clock. the basis of our research approach is an understanding of how nature regulates certain proteins. ones we can and now we can design new drugs that mimic these processes.

or and can and which means we can manufacture new drugs for cancer auto immune diseases and other illnesses hashed out and. a computer program displays the protein atoms 3 dimensionally allowing the researchers to move around inside them in search of suitable substances. and it's not for sure that computational chemistry. when our computational chemistry researchers use screening methods to examine millions of substances in a virtual library to find a match for the target protein from stupidity and. it's like an extremely challenging puzzle where many researchers around the world are searching for the right piece. and skiffs. there are disadvantages of course. our scientists have to be very organized to work with so

many different companies scattered around the world. and it's to my spirit. mind for example you have to get up pretty early to do a teleconference with china. and they also have to get used to not carrying out the experiments themselves too few. personnel and china costs only a quarter of what it would in germany or the u.s. . so can you do 4 times as much with the same money that would be a turbo charger for research. jonathan montague has already gone through results with chinese researchers when colleagues in the u.s. are just pouring their 1st coffee. but what can such a small team achieve. yeah definitely like the advantage of a small team is that interpersonal communication is easier and we can have everyone in the same room and interactions.

globally scattered and yet still all in one room this flexibility is a boon to medical researchers around the globe. the various approaches are diverse and from a sick network laboratories free research and the crowd funding for finance but they're still not universal panacea. it can be very fashionable when you talk about the old computer stuff sequencing the drug discovery stuff is a whole lot more. but they are helping to create new spaces for research outside the precisely demarcated territories of pharmaceutical giants. it clearly said solve. progress and of scientific activities not only in one laboratory but many liberties in the world. and the

masses are crowds wise enough to rally around the right ideas to finance them. i think it's both pros and cons some projects. are discarded for irrelevant for instance in the tradition process to get funding that can be done thanks to all the anonymous and the most but on the other hand some projects. discarded for a good reason by the traditional research funding but this also risks being done. it's not just the content that's changing the researchers themselves also. i have to adapt an intensive exchange with the public is something very new in the laboratory. one really important us big. scientists we need to do. and we need to improve is to be able to bring the public

exactly what we are doing but also be actually doing a crowd funding. communicate science to people even if they don't fund it because it's out there your advertising your science and the people can choose to i guess maybe less than one in 50 choose to fund but the other 49 here are. medical researchers fighting for media attention hoping to be seen by online crowd funds. and the pharmaceutical industry is watching and waiting. for projects that could still make a profit. they may have inspired people companies to get back into this because now they see there is a treatment. save

the planet not my job. reporter david johnston says it strains we have to do something. the climate crisis is threatening our very existence. many germans would agree but are they prepared to change their habits. humanity be some lived. close up 90 minutes telling.

me affectionately asian but as affectionately as you can. laddie near putin in the middle of his election campaign in the year 2000 a documentary was filmed for russian television but director vitali munson captured much more that was to turn the camera back on the course. of the film secretly chronicled a power grab actually everything was precisely planned structure. featuring tom supporting roles to the freedom of russia. and featuring a lead role like you've never seen before let me be clear with you. for that matter 7 year itch of the ends justify the means. to those witnesses starts december 13th on d w. n one. this

is t w news coming to you live from closer to impeachment after months of investigations democrats in the u.s. announce the charges against president. they accuse him of abuse of power and obstructing called gris he calls it a witch. also coming up more tremors at the volcano in new zealand the activity is hampering efforts to retrieve bodies supposed chilled on monday and fueling fears that another eruption could be imminent. tensions rise between moscow and berlin.