arks with assets estimated in the billions of dollars. now reminder of the top story we're following here for you at least thirteen people have been killed after a passenger plane belonging to the russian national carrier aeroflot made an emergency landing in moscow the plane was on route to months when it had to return to the capital shortly after take off turn the landing the rear of the sukhoi superjet was already in gulf in flames. you're watching t.w. news from berlin up next the g w documentary medical research on the move thanks for joining us. and europe will be going to. put what's become of it. will it look like to morrow. camping for a better future isn't enough in europe requires our purchase of haitian.

european elections twenty nineteen may twenty sixth on d.w. . the ice bucket challenge in two thousand and fourteen people all over the world record ice water over their heads in a bid to focus more medical research on the rare motor neuron disease a.l.'s. they posted the videos on social networks and raised millions in private donations scientists took note they'd seen how their laboratories and the public could be just a click apart. what would you rather we didn't have to stick it to us i think we can now invent new drugs faster if in the current i believe that there's so much more that we can do. with why the public support medical researchers can tackle diseases at the pharmaceutical industry overlooks.

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 two molecular biologists from berlin were searching for. now for the first time we'll be able to understand all the secrets. even you know what. the. scientists daniel sieberg a majority of the pianists worked for the max planck institute for molecular genetics. fine and. one night i was on the internet and 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 six toes which was interesting to me but i'd 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 limited formation and the bone malformation and i thought this can't be happening doesn't come. this is precisely the true scientist specialty they deal with hereditary diseases. and it's going 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 two so i figured the best thing to do was to sequence that which is our specialty if 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 when you mention it to see if they set out to decipher the famous catch genome but laboratory analysis is expensive so the two researchers moved to make use of little bubs high profile in the tiny town of bloomington the

yellow. lab. with over two hundred thousand you tube subscribers and three million likes on facebook the feline reaches a vast number of people. social celebrity we wanted to do abroad not only us but kind of getting also the funds or people a common interest in understanding what is behind the certain 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. if we're going to do this that there should be some sort of message attached where there is are you know reached out. three excited. the berlin researchers launched a crowdfunding campaign in two thousand and fifteen crowdfunding draws on the vast

number of people using the internet. the cats fans were able to donate small sums to the crowdfunding platform the scientists needed a total of sixty five hundred dollars to cover part of the research costs but people donated even more and in the end it brought in over eighty two hundred dollars. now the real research could begin. so normally what happens you know because scientific. you basically work in the lab for i think two or three years and then you keep your results and they're not the same then you basically release all your results who confirm the cycle belief and experience because first you can get engaged socially with the people the thing that actually your research interest and then doing then 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 secret thing that you know 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 trying to understand whoa hold the you know function on. and duration that you know can lead to human disease. the analysis found that little bug 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 six 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 of me so i'm. crowdfunding as a way of enabling research that might otherwise not happen. but actually they move in that the bus huskey some addition that nobody has discovered before in the study of the machine gun. information that we have not seen previously before not there you know there will be all those the same.

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 christine i'm going to los. where the voice of those affected by red diseases. that affect some four million people in germany alone but few of them suffer from the same rare disease. density in american terms it's normally a few thousand people but it can also be only a handful of patients worldwide get. patients like yourself in the shots who's ten years old today. she was born with a swellings and a heart defect. her parents went from doctor to doctor but no one could give them an answer it took eighteen months to get a diagnosis josefina has

a rare genetic disorder williams syndrome but she still has a normal life expectancy is it if you're affected by red disease it means first 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. which is when. the pharmaceutical industry focuses on the development of therapies for common diseases secret tom 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 thirty thousand diseases six to eight thousand 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. on research spending by governments in the

pharmaceutical sector has been rising for years there aim is to achieve the e.u.'s lisbon target of three percent of gross domestic product germany austria and switzerland together and. asked about one hundred twenty billion euros in research and development every year. however those affected by rare diseases do not automatically benefit the pharmaceutical industry applies a simple formula. for you i think history class how common or how rare is the disease heap is there any basic research that shows how it can be treated. or can and can we expect research into it to pay off at some point. but i think you haven't been a model i was taught. many people affected by rare diseases a hope for new drugs or gene therapy but it's a complex process scientists must first find and develop an active substance that

they tested on animals so as not to endanger humans. the studies alone often take years. when done been 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 ten thousand active substances evaluated in creek clinical research only about five actually get as far as clinical trials active ingredients are tested in three faces off and on many thousands of patients and the drug will only be approved if the clinical trial goes off without a hitch that's got the whole thing takes about ten to thirteen years and cost several hundred million dollars one dollar. pharmaceutical companies prefer to invest in projects with high profit expectations rare diseases are not included they're often complex and unprofitable christian among those seats the challenge it

isn't the say congo you 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. supports us in this. digital techniques are incredibly good tools. he says middle. but where the market shows no interest the state and now society can step in with donations if necessary. it worked with the ice bucket challenge at least one hundred forty million dollars 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. 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 learn carved by only enthusiastic celebrities tipping ice cold water over their heads and the following it attracted. is i suppose a. follow hat. how big does the crowd have to be. many followers as it takes to tackle the thousands of rare diseases why does someone need to stay sick when we have the tools to help. romania or tease founded the global aids organization bridge or nomics in two thousand and twelve. that helps patients with rare diseases to finance genome analysis. yes mean fun for a clean and her brother are two of them. d.n.a. analysis showed that the siblings had different genes defects that required completely different therapies.

it is very important to people i mean reagan has over eighty percent of gray 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 your early on they say oh it's experimental this experimental tests so we can cover it and we started helping any families that we would offer that as an option if they could not for the to. so he they're also trying to do insurance coverage and if that's not work we say well we'll help you happened and you're willing to do that. mix a company's patients from the crowdfunding campaign through analysis of the results to possible therapies.

and i think just in the past i would say for years alone there has been a big increase in interest in this and in pharma the more research that is done the more findings you know whole he's associated with disease the more people will be interested. networking in crowdfunding are useful tools for people suffering from rare diseases. but there's also a need for political oversight. as well in the 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 and it's and. these incentives for the pharmaceutical industry include simplified approval for seizures 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 one

thousand nine hundred it was the first time that all three billion base pairs of the human genome have been identified and mapped. the project took thirteen years and cost three billion dollars today you can have your genome sequenced in a single day for about one thousand dollars 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. come to the fortune income. but what impact is having to first court the broad public via the internet have a research. what sort of projects stand a chance. it's. we're flying to london where british researchers were the first 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 twenty five thousand pounds the crowd funding campaign brought in more than twice as much. ice. david not as a psychiatrist at imperial college in london by standing brain out of the influence of l.s.d. he wanted to create the first 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 there's a 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 twenty years that most pharmaceutical companies have given up and that means we it's now up to us as 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 kind of reset the brain so that you can overcome the stress rather than protect yourself against. the w.h.o. classifies 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 the 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 it's finished 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 two kinds of harms a drug can do there's

a harm the drug can do to the people who use it and the harms 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 we may even have benefit if the. 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 dangers 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 fifty years because the traditional media refuse to think

differently and social media got much more opportunities to communicate the truth to people so so i see crowdfunding as part of a larger public. communications 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 then the crowd really step in and even impact health policy will medical research become like grassroots democracy in the future. but it seems to be more easy to mobilize people for the other rights research was a bit different in my case. we're visiting christopher rob in stockholm he's also been trying to obtain funding for his research topic first from conventional bodies through crowd funding he's a psychiatrist at the carolyn school 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 and 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 proven. method to treat adult men with pedophilia disorder some studies indicate the. adult population one to three percent have sexual fantasies a moment children almost one in ten girls. sexual abuse during childhood and one in twenty boys and in almost fifty percent of the cases this done by

someone with a pedophile it is a wonder. wants to find out whether a prostate cancer drug can also prevent it to flee 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 first 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 two thousand and sixteen 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 the. post called some t. shirts and everything. the outcome was devastating crowd showed little interest and not even twenty five hundred pounds were raised. thirty eight thousand. but then when i counted the money when i looked on their count. almost nothing came in if you sponsor this kind of project maybe people think that you have some kind of personal link to the problem. you know something that you have been the victim yourself or something like that and most people choose to not because of that i think. rather has now turned his back on crowdfunding for the time being he's recognised 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 many come in to 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 post and it conceals many people. more than two hundred donors have so far invested over three hundred thousand euros 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. 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. this. morning. we're in mumbai india mumbai's location and population density make it a stronghold for transmittable diseases the monsoon in june also brings in mosquitoes sixty percent of the city consists of slums the much loved breeding ground for the mosquito genus and the felice. the females transmit parasites one

sucking blood which causes malaria. the national chemistry laboratory. this is work done. is doing research into anti-malaria drugs. definitely is not a strict population in fact. settings like. for example in mumbai in india we do have. to see snow so every year after the monsoon rains here you have a spike of patients coming into hospital with. with two hundred million new infections worldwide every year malaria is hardly a rare disease nevertheless the development of an effective drug has been sluggish

. chronic diseases like you know i think once you become obese then do come. along and there is a lot of money to be made by. companies because they can sell your drugs for an extended period of time with infectious disease. especially for malaria is you know just two weeks treatment. the scientists have to deal with the pathogens mutations despite extensive research to 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 vaccine against malaria. the

swiss foundation medicines for malaria venture supports scientists in india and other affected countries working with. cultures that actually have malaria. it's really important you're always hearing in the news that you know there are new mutants coming your cool 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 four hundred molecules some of them have the potential to

become drugs real drugs but a lot of science needs to get done at the fundamental level to understand how this money goes for getting so m.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 one 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 research to go ahead independently of endowment funds. the scientists including now produce the expensive molecules themselves which also excel or it's 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 for one of the things we try to do we looking at chemical libraries and i didn't fake molecules that can block any nation of the past it and then look at what in the part of it or in the 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 two sets of molecules within the millennium 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 resistant 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 say you know africa in south america or 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 network research are open to all excel or raise 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 na was very impressed with the work on rice which is a product that. is a device using a gel and actually emptying the rights to the outside. the cost ninety thousand euro's. vessel jail is a non-hormonal polymer gel that specifically blocks the vast difference and prevents sperm transportation for about ten years. the principle is comparable to sterilization but can be easily reversed because a second 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. that'll. get it to market. it's a horrible quality it. is not. the devil which zero estimates that there are eighty million 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. pharmacy to. existing one. now products they feel that if they develop that they can keep up 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 on their nest but how will they 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 first visit project in regard to maybe get in. on. the study in india will continue in parallel however the project has hardly any chance of entering the western market from there getting approval for a 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. of the nothing to do about it with. the us but 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. my holtzberg live in the east so we say that 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 wegg you late certain proteins.

that ones you can and now we can design new drugs that mimic these processes. or and which means we can manufacture new drugs for cancer auto immune diseases and other illnesses hashed out on. a computer program displace the protein atoms three dimensionally allowing the researchers to move around inside them in search of suitable substances. and it's their own so for sure the competition the 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 into. it's like an extremely challenging puzzle where many researchers around the world are searching

for the right piece. as gifts. there are disadvantages of course. our scientists have to be very organized to work with so many different companies scattered around the world. and. 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 if you have one. personnel in china costs only a quarter of what it would in germany or the u.s. . so can you do four 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 first coffee. but what can such a small team achieve. yeah defo 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 single network laboratories and 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 really sets off.

a program of scientific activities not only one but a do but many liberties level. 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 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. when greenport on 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 so it's to be but even if they don't fund it because it's out there your advertising your science and beat people can choose to i guess maybe less than one in fifty choose to fund but the other forty nine 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. your

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in thirty minutes w. . the world. so much of living. sure linked to news from africa to the world or link to exceptional stories and discussions from no news as easy and i would say debbie to come smutty come join us on facebook. for god. the only order is history the world is reorganizing itself and the media's role is keep shifting colors the topic in focus at the global media forum twenty nineteen i'm calling the laboratory for the digital age. who are we following whom do we

trust to debate and shape the future as the deutsche of global media form twenty nineteen the place made for mind. player. play . this is g.w. news live from berlin and at least thirteen people have been killed after a passenger plane makes an emergency landing in moscow for the tail of the aircraft belonging to a russian carrier aeroflot was engulfed in flames when it touched down we'll go live to our correspondent and moscow. also coming up israel's prime minister orders massive strikes on gaza. this comes after scores

of rocket attacks on southern israel by palestinian militants will go to.