Going to just in preparation I'm going to hand out some index cards. Would you mind taking one and pass it along? Just take one and pass it along and if you could all Make yourself acquainted with a pen Be ready to write something down. I have two sharpies So if anyone needs a pen, I need one You can have the other.  Who's saying hello? Yes. Have you guys had a good day? What's the best thing that you've heard today? programming Sean the speaker that was in here just then told a really really good story about agile coaching or any of you guys agile coaches Did you sit through his talk? Oh my goodness? And I was listening to him and I thought it was a really good Presentation he told the story really well, and it was good information and about halfway through I went oh crap The mob probing programming thing is next door, and I was I was towards the front and I Anyway Thank you very much for coming in today I Did an activity or two last year at Agile India. Did any of you guys come along to that? None of you. Well lucky you did Yeah, so as you know, I don't like to work very hard. I'm management I Work I work at a company called Akin X and we've got a team here in Bangalore And I just happened to be here this week, so it was convenient that the conference was on What I what I was doing on Thursday and Friday as I was running a conference and agile conference in Melbourne in Australia And so I flew from one to the other and that's kind of funny. It's it's like it's even less work than management So I put this together Intending to do this session at the conference in Melbourne and to have practiced it for you guys But I didn't because I was I was running the I was running Well, I was not running the conference, but I was at the conference and have you guys heard of Alastair Coburn? Right agile manifesto guy one of the good dozen men that started the agile manifesto So he came to the conference as a keynote and on Friday afternoon I was running a workshop activity and a little bit beforehand he comes up to me is Craig Craig I've got this great idea for a game Be my guest and so he took over the the session that we ran so I haven't actually rehearsed this What could possibly go wrong? Yeah, exactly exactly Anyway, here we are. We're ready to start. I think we're settled down. So The theme is improved together and the reason it's improved together is two or three years ago Coburn as One of the grandfathers of agile and I were having a conversation in Melbourne and he was talking to me about It's so complicated these days. There's all these methods. There's all these frameworks There's all these elaborations and it's getting harder and harder to buy into it at the end of the day He came up with this meme called the heart of agile Some of you might have come across it on the internet and if you haven't it's worth having a look at the heart of agile and it what he's what he's saying in that is like, let's let's put some Principles back into the conversation and get away from frameworks and methods because frameworks and methods can sometimes be a red herring What we really need to do is have guiding principles when we're applying the frameworks and methods We can check them against the principles and see if we're heading in the right direction right, so Hello, so So So the heart of agile idea comes up with these kind of four Four principles and it's almost like a plan to check axe cycle and and the heart of agile is Starting anywhere you like in the cycle deliver reflect improve and collaborate Alternatively, it could be Improve collaborate deliver and reflect you start anywhere And you just cycle through that and you keep on going where are we at right now and you can ask yourself questions Do we need to collaborate more? You know what collaboration feels like and looks like and maybe you could do it better Do we need to deliver better? Maybe we do right do we need to improve better? Do it anyway all of that the topic that I chose to anchor my talk on is this idea of improving and so and so This is what I'm talking about with you guys. It's linked to that heart of our journey and then I thought About where I work and what we do we build software for the construction industry, okay? Fair enough. Most of us are involved in building software What we do is we build a collaboration platform That's what we call it and so this this notion of collaborating together is in the DNA of our company and I look around and I go You know the industry's got its ways of working and then a connects is a kind of a peculiar beast It's got a very weird personality when you work inside it And it purposefully doesn't follow industry patterns and standards and it purposefully tries to do things different Sometimes in a good way often in a really frustrating and stupid way but that's okay because in general the company gets a little bit better year after year and everything's kind of heading in the right direction, but it's interesting because There's there's a map of our teams and and the reason I'm in Bangalore like I come from Melbourne That's our head office and that's where it started and then six or seven years ago we opened our second development center here in in Bangalore and It's grown slowly and now it's kind of big enough that we've had to change offices a couple of times but but we're in the we're in the business of Collaborating and we're in the business of helping customers Work together just like you guys are in the agile community, right? It's like what do you see you see if we put people together and get them on the same page and unify their goals and get Them to talk to each other and get them to get the power relationships out of the way and all that sort of stuff things just Work better and so we kind of put that into software and other people do the same sort of thing and you know And as a result our company does things like you know, we've got these nice little Statements about you know, we make the world a better place and everyone wants to have that as a part of their part of their story, right? But but linking that back to improving together, that's the little preamble right linking Why would I come along and want to talk about this? That's I guess I'm just trying to explain myself well What does improving together? You might have read the introduction that I had right so it was it was full of assertions Right, and I'm gonna leave it to you to research those assertions and find out how true they are but it's the the question is how does your team improve and What are the limits to what you can do? So I've got this notion that best practices, right a dead end a red herring and When we look at things like scrum or XP or Kanban, and we think that's a pattern. We should follow it We're making a terrible mistake It's not that scrum XP and Kanban in themselves are bad It's just if we lift it up and we drop it on our teams We've done something wrong, and I guess this links up to what Shane Sean was saying in the talk before There's an annoyance to this like looking at the work and figuring out how to improve things Which is about the context and the situation and the people and we need to attend to those people so Don't seek a standard But do seek to do better and continue to do better like a connects as a company started around 2010 Sorry around 2000 or so and it kind of drank the agile Kool-Aid in about 2007 and so We've been doing this agile stuff for 10 years and it came from when the company was small So it wasn't like an enterprise you're trying to disrupt it and break it It's just like at a certain point we needed to put some practices and disciplines to kind of pull the team together and get them Oriented the right way, but then the team kind of grew through that and matured through that and they left Scrum and you know there are aspects of XP and there are aspects of scrum all over the place But but no one's got a scrum master We don't have any standard processes and practices around software development We do around some things you got to kind of coordinate communication and taking things to market and all that sort of stuff But at the end of the day what we're doing is we're kind of stumbling into the problem and then going What are we going to do about this and one of the problems we have at the moment is linking up all the teams Right, we got at the moment 20 something teams 28 teams or so and they're all pumping stuff out every couple of weeks maybe every month and What does that do the sales force? Yeah, the customer service people how do they absorb all that information? It's really hard We don't know the answer yet, but it's a new problem So we're going to go figure it out and we'll look around and we'll look for patterns But then what we'll do is we'll we'll go what do we need to do for our circumstance? Yeah, so So that's the thinking that's behind this thing this workshop that we're going to do together Workshop I hear you say well That's because I'm almost finished talking very soon. You're going to do all the work So the theme improve together. Why did I put those two words together? The first part is improve and the second part is together So I've got this kind of three-step activity that I want to go through with you and It involves believing this right it involves that better The assertion that better is better than best right so continually involving to improve is better than attacking your best practice And I kind of get this my connection to the agile manifesto is this bit right the rest of it You know, we've all looked at that thing over and over again I'm sick of looking at it, but I'm never sick of looking at this bit like figuring out new stuff with each other and sharing Air information, that's the cool bit the rest of it. It's just stuff continually learning and continually improving is the best bit so Improving so here we are in the activity bit. You've got your cards. Does anyone not got an index card? Excellent. Here you go. Could you just pass that that way? Where's it hands up? Yep. Come and get them. There's a collection You go just pass him back that way so It's good practice when doing these sort of things too. I've got more up here if anyone needs them It's good practice when doing these things to explain the learning outcome You seek explain all the steps then go back to the step in front of us and explain that If I were to do that, I would be a good facilitator instead of a manager Instead, I'm going to give half ass explanations and hope you do your best Well, I'll do a little bit. I'll do it. I'll try to explain it a little bit. So So so so what's the activity right? So what I want you to do on the card right now is with your pen to kind of big but just pick a thing Right one thing right on the card just watching the room people thinking scratching their heads wondering When you've done that what I'd like you to do, I've already bored somebody What I'd like you to do now is write why that is a useful practice Right? What problem does it solve for you? Okay, so you've written an agile best practice on the card now underneath that I want you to write why it is good for you. What problem does it solve for you? sorry one Well, you can have two or three reasons, but only one practice But when you're when you're done, just give me some sort of wave of the card or something So I can get a vibe of how much of the room is completed. Just give it a second longer While we're waiting for the other guys to finish writing their notes You can sit there and be very mindful think deeply about why that's such a good practice Okay now What was that word that we were looking at a minute ago? improve better that was it flip the card over and thinking about The or one of the problems that you are addressing with that best practice think of something better think of something better than that best practice and Actually, it's going to be difficult.  Did anyone say retrospectives? Right, so I'm not going to use that did anyone go daily stand-ups Right, that's if you did anyone do test-driven development. You're a software developer Sorry coding sorry Just coding right well pick something obscure right like I'll say Domain-driven design right no one's used that have they right so we go well Why do we use domain-driven design and the reason we use that approach is so that we can navigate through the app later Right right now for the next few weeks or even months. We all know what we're working on and we get it Right, but in four years time when someone comes to work on this again, they're gonna have no clue So let's label things properly when we're writing up our solution. Yeah That's the problem. So what's better than domain-driven design? Is there a better thing that you could do right? I don't have an answer right now in my head But is there a better thing so that's what I'd like you to do now flip the card over write something that's better than retrospectives Right that solves the problem. You're trying to solve Yes, can't hear me Is alright did you get the instruction? I will repeat it. I'll come and stand here So the idea is you've written a good practice How are we going and when you're done just give me one of those little waves it's not that easy is it? Yeah But talk to the people around you if you need help brainstorm together When I was in that conference on Friday Thursday Sorry, when I was at that conference on Thursday, what was I gonna say? On Friday it was actually on Thursday. It was a two-day conference when I was on on the conference on Thursday If you'd like to pair up to solve this activity I'm not now. I was just giving that as a technique to work through this activity. Have you got your answer? What have you got? I'll use you as an example. How are we going done? Give me a little wave Okay, it's harder than it looks right keep going keep going. Yes Can be but you want to look for better. So take take a good example is take scrums Let's deliver Quarterly or monthly or every two weeks, right an improvement on that was Kanban. They just said continuous flow, right? So and it kind of solves the problem of like reducing the big batch problem, right? So there's an example what other examples do you have a lot of you guys said retrospectives and stand-ups or problem You're trying to solve could you do something better? So, you know, there's the 15-minute stand-up. Why do we do 15-minute stand-ups? What about 10 minutes does that solve the problem? What about no stand-ups? Does that solve the problem, right? So what could you do that's going to get you to better? Now the trick is you have to do this bit because I need the answer to this for the next activity Doing stuff like this certainly does Give you an appreciation for those people that come up with frameworks or any of you guys agile trainers that like any trainers that do scrum training or anything like that one of the activities in the training milieu is To get people to design their own frameworks, right? So you teach them a whole bunch of stuff and then you go right now a class design your own framework and then people Do their stuff and more or less it looks like scrum So, yeah, that's a thing. We're good. How are we going? Anyone need more time? Because we're not in a rush at the end of the day. I'm just chatting away with you all right So click click click, right, so you've got your thing now what I want you to do is Just take a moment to share that with the person next to you what was your better, right? Now it's the conversation time. So turn to your partner and say and I'm going to use you as an example. Sorry, Tarek Tarek here wait wait wait wait wait follow the instructions. Don't start yet Hold it on your lip So Tarek came up with retrospectives and the problem that they address is Um Can you what is it? It's addressing. Yeah, the prob the good thing about retrospective is addressing the performance proactively and Visiting the doctor before being dead So there you go. So retrospectives Proactively getting in front of problems visit the doctor before you're dead All right, can I have a look and his version of better is rather than do say fortnightly retrospectives Is to do a daily retrospective so you could at the end of each day do a health check How are we going as a team is there anything we need to do better right lovely idea? Yeah, and maybe that's going to take five minutes instead of an hour and a half right great improvement So you're all talking to each other now because they are Don't be left out get into the conversation has everyone had their turn now you warmed up Now you're warmed up.   Thank you everyone Wrap it up Wrap it up. I got this microphone going on. Hello Is this better guys? You really do have to have it sitting on your lip if I do this look at That's a finger with the way and you can't hear me anyway, so can I just have some of our esteemed audience members share an improvement Yes, my friend hang on. Don't forget put this on your lip Initially I wrote a retrospection, but then when it is better I wrote it as daily retrospection else to improve on daily basis Could I have an yes you look ready? So so I wrote sprint planning as the best practice the reason people come together in a meeting They estimated together commit for it and it's more likely to succeed sprint planning was the best practice the improvement So I mean in real world normally there is a sprint plan set out there There there are the plan changes over the course because there's some other urgent tasks or Which which normally hamper the plan so the improvement is to discuss it on a daily basis Are we there are we following it and is there a need to recalibrate and ensure that? Yeah, we are all interested That is an outstanding activity to do isn't it like let's replay and every single day make sure we're on track for doing the right thing Yeah, the thing that I have mentioned is Thing that I have mentioned is more or less related to continuous delivery although we have not been able to achieve all of it, but Up to some extent we have achieved it the improvement which is there is that even if the things are available Associated stakeholders are not probably spending enough time or at right moment to give those valuable feedback So improvement would be to increase the frequency or increase the efforts by stakeholders to use things which are available and give their inputs Cool, so pull the stakeholders into the project more intimately great improvement one more. Does anyone What about the back row? No, sorry. I'm gonna go to the very back row Did you guys you guys got one? Yeah, the very back corner of the back row. I talked about the retrospective, but I didn't share anybody because it's like I was in the middle and They do shared so so I couldn't get a better practice. I was just wondering what to write and whatnot. So Well, at least he's brave enough to stand it up and say I didn't do my homework Okay, cool, so Did you see that did you see that there's great ideas or you got to do a stop and think about them? And they're not necessarily in a manual, right? So great potential in all of you to find better ways of working So that's the improved bit. That's just a great example. Well, that's a simple example I should say you're gonna say something to me. I'm gonna bring it over That's a simple example of just a technique to keep pushing the boundaries What are you gonna be doing in 10 years time after all this basic agile stuff is way behind you? Yes, I was just going to ask you that, you know, why we do did the exercise we said that these are better ways of doing stuff and You know, there has been Foundation laid and people practicing it for so many years and then they've come to this conclusion. These are the best practices now Not knowing how this will turn out. So maybe daily this retrospectives Might not turn out the way we are expecting it to be So, you know, in our minds, it is a better way to doing it, but it may not be the better way Right. So the question The bottom line in that question is like, how do I know to trust the patterns and practices in front in front of me, right? And the answer is trust but check, right? Maybe it's a good idea, but look at your circumstances Try everything as a hypothesis as an experiment, right? Let's try this fortnightly retrospective thing and see what happens, right? It doesn't work. Don't necessarily throw it out straight away. Maybe look at the way you run it and improve it, right? So when Retrospectives are widely adopted across the industry and people are talking about how good they are. Maybe there's something to master But maybe not. I don't think all our teams run retrospectives. I think the majority of them do not Right. And actually out of the ones that do back in Melbourne, most of the retrospectives involve whiskey and beer And it's more like the end of the week. They get together and say, did any of you guys ever see a show? It had, I can't remember both of the actors. One of them was William Shatner and It was called Boston Legal Did any of you see that TV show? Some of you did. At the end of each episode, there were these two lawyers And the other one was, what was the other actor? James Spader, James Spader and William Shatner and there's a big fancy law firm in Boston And at the end of each episode, they'd be standing on the balcony with big fat cigars and whiskies And they'd go, well, wasn't that an exciting adventure, right? So that's the vibe that some of these retrospectives are like It's like, how about that week? Let's not do that again Or, well, that was good, wasn't it? Aren't we proud of the things that we did? But they're quite casual So that's the first part, right? Don't think that these best practices are an end state. They're just a stepping stone They're taking you somewhere else, right? But the somewhere else is something that you're going to design with the people you work with The next part of this activity, how are we going so far? Right, you okay? Happy so far? Cool I'm really tired I flew over from Australia on Sunday into the evening, and then I got to the hotel at 4am And then I slept for two hours, then I went to work And then last night, I went to sleep at 10.30 And when you're in the wrongs of time zone, never go to sleep at 10.30 Stay up as late as you can because I woke up at 12.30 and didn't go back to sleep I tell you that because it builds some amicability and some rapport Which points us at this next activity When we bring change to the teams and the organizations that we work with What vector do we approach the change from? Are any of you guys agile coaches, scrum masters, managers? Just give me a little one of them So, change managers? No change managers willing to admit that Oh, you too, brave Just joking So the idea is, do we assert change on people or do we change things together? And so, you don't improve people and teams People and teams improve themselves And I suppose that's a theme that you've heard throughout the day Yes? No I'm the first person that's hinted at this Everyone's been saying it all day long, right? And so, Thucydides I was just looking for an interesting picture at this point I went, hmm, my slides are pretty shit so far So I thought I'd get a good picture and I got this one But, you know, this idea of the strong will be strong and the weak will be weak And there's a power imbalance there and it's going to play itself out So we as mindful practitioners of this agile stuff or this management stuff Or this software development stuff, whatever it is we do We should be aware of the power dynamics And especially if you're in a role of authority And you should try to not assert your authority on to other people But partner with people So when Sean, the guy that was talking in this room before me He was talking, as an agile coach, when I was successful What I would do is I would walk around and I would share knowledge And then the teams that were keen on that would pick it up and use it And then they would be effective and successful But when I tried to tell people how to do their job Oh my goodness, right? Have you ever been in that circumstance? Yeah, right, so you know, let's partner together So to demonstrate that, I'm going to do an activity with you Once again I need you to partner up with someone And my friend in the back corner, you're a good man Yes, no, no, you can stay there Actually, let's all give him a round of applause for being a good man What I want you to do is pair up, it's got to be pairs And if there's odd numbers, there can be one odd number Everyone should be in pairs, there can be one group of three Can you all just organize yourselves really quickly into that? Okay, so with these index cards What I would like you to do, the tallest of the two of you You might have to stand up, come on, on your feet On your feet, stand up Right, look at your partner, which is the taller Right, you've recognized who the tallest of the pair is Great, you can now sit down again Okay, so I'm all about collaboration And I'm all about doing it with you, not to you So just shut up for a minute What I would like you to do, tall people Is tell your shorter companion how good your idea is Explain to them how to execute on it And convince them that it's something that they should take to work next week Right, you've got good ideas, right?  Right, so there's lots of good ideas in the room So now you're going to pitch your good idea at the other person And convince them that it's a really good thing to do Can you please take three minutes to do that? At the end of three minutes I'm going to call time No, the idea that you wrote on the card Yeah, anyone need any help?  Have you explained it? Yeah, you got the basic ideas across Some people still going I'll stop them in a minute Okay, can you please stop talking? Hello microphone, oh The Wi-Fi's got a rate, hello Hello, is this working? You can hear it, I can't hear it Okay, so short people Stand up No, no, no, if Stand up if you're convinced Compellingly that you need to take this good idea back to work next week Okay, so Okay, so what I want you to do now is Once again Once again I want the tall people to start the conversation You got people? It's not that you don't count You're going to do most of the talking But this time I want the tall people in the pair To ask the other person about their good idea To explore it, to have a conversation about how it could be used And how it could be useful, alright? Just go through that conversation Same sort of thing, we'll call it three minutes And it'll turn into five So, go, you got it? Okay, so I'll say it again What I want you to do is this time The tall person is going to turn to the short person with them And say, hey, about the thing you wrote on the card Can you tell me what it was? And can you tell me how it's useful? And can you tell me how it's better than a standard agile practice? And I want you to inquire, to discover What that good idea is And to discover how it might be useful for you So go ahead, do the interview, do the asking Okie dokie, last 30 seconds Yeah, I'm just going to start shutting you down It's time, you ready? Hello, hello Thank you very much Hello, thank you, hello So, the first time somebody pitched their idea The second time somebody inquired How did it feel? What was the difference? So, not the idea, but the experience Let's just take a moment and think about The experience you went through Thinking and listening And asking questions versus telling, telling And can I have a couple of people Just, yes, I'm going to ask For some people to reflect out loud for the room So, basically I was asking him So, basically I was asking for There are problems in the design And there are some leakages that are happening And people are finding it later in the QA And development time So what is the way we can handle these things And by himself, he identified as to What are the possible solutions And ways to capture, catch hold of them And they themselves came out with the solution That the design reviews could capture these problems So, with the previous one Where this was imposed And saying that the team should do the design review Or the team should do the code review And the acceptance was not there So, I as a recipient Or the person who was inquiring It was more of that I was not imposing So, I was free I was learning from the ecosystem As to what people will have in their mind And what they will accept So, basically I had this daily stand up And my initial partner Had suggested three ways to improve it And it was one with sending Minutes after the daily stand up Another was daily stand up with optional retro And Thor was doing twice a week If there are longer stories So, when he was trying to explain me Okay, this is the solution Or can be the better way I was not very convinced initially Then I went through all of them And analyzed, okay What if then I liked the second one Daily stand up with optional retro Very nice And when I was pitching to my Second partner I was more confident Like this is something, yes This will help to make it better So, that was more So, in the first scenario Your partner pitched an idea to you In the second one Your new partner asked questions Now, how did it feel Being in that different type of dialogue? Well It feels more confident When I'm telling something to other people And I feel like More empowered Like that I feel that, yes I can explain something To people like that Not based on this particular experience But typically you face this Always in your work life If somebody tells you to do something There is always that initial reluctance Okay, this guy is telling me Does he know better than me, right? Whereas He's teaching me, you know But if you Willingly go out to the other person You ask for a suggestion And that person gives it to you It's your need So I think the receptivity of it At a personal level is so much more Yeah, like I mean This is obviously the point That I'm trying to make Does anyone else want to share one last example? You So one thing I noticed was In the first case I was already thinking in my mind That I have to frame my Statement Like it has to be bulletproof I will say this, this, this And hence that person has to accept Whereas in this I was like just I was speaking like I was thinking And like as I was Thinking it, I was saying it And there was no Cognitive load Like I was comfortable Because there was no judgment Probably Yeah, so I reached a second too long But I love that statement like I felt more free To speak because I wasn't being judged Because we were having a conversation Not because somebody's telling something That what, where And how. So I love that That was essentially the two parts The yin and the yang to improve together Right, so one part is like How can we think about more Better than best What are the pathways to finding a better way to do things And the second way is Not telling people how to improve But finding improvements together And having conversations And doing it in partnership with each other So they're the two things And so I made it an activity I feel like you can sit here and listen to people Talk, talk, talk At the end of the day, you're sick of that, right You want to do something, you want to have a conversation with each other And then you can build some little muscle memory Around this, you can try something And now you've had this type of conversation Maybe you're all used to it, maybe some of you aren't And you can go back to your teams And you can do similar types of conversations So that's what I wanted to get out of it And the last point before I wrap it up Because in 30 seconds I'm going to get thrown out of the room It's It's It's the last Two sentences This happened last This happened last year too That's one sentence Damn it, that's the algebra coming on in I might see you next year Bye bye


Hey, what's going y'all? It's your boy down from the down show in France and today I have to ask y'all a question. So check this out So y'all know that I do the dance practice reactions and review, right? Right, and I have been getting ready to do more of music videos, right? Right but This page is growing and I want to add some things. I'm not stopping doing reaction to the kpop World I'm not stopping at those dance practices those performance videos are still going to happen Even in music videos, but I'm a dancer and I would love to add some things on this channel So this stuff I'm gonna add I'm gonna talk about in a second, but I want to ask Charlotte question What else do you want me put on this channel? That you would love me to do as you know, we're dealing with dancing music by the line Basically, we're dealing with dance and music and music videos. So concept videos. So I want to ask y'all What else do y'all want me to add to this channel? I want to know your thoughts No, just playing but no for it for I want y'all to give me some of your thoughts about would you love for me to See me do with dancing on this channel now some of the things that I would love to do in here is to Check out different choreographers Some of the choreographers that's choreographing for the for the kpop world. I would like to see their work What else they've been doing? I would like to look at dance battles with y'all Like would y'all be down for that? Like I want to look at different dance battles around the world I want to react to it like I want to you know do some reviews on that I want to look at different dance styles on here So y'all can check out some of the things that I enjoy and I'm gonna react and review and do a Little quick little breakdown. I will also just love to also put my dance work on here So if you're down for that, let me know your thoughts. Okay, so we're still doing a kpop work Okay, don't get it twisted. That's still gonna be there. Okay, but I want to add some different things dealing with dancing We got battles concerts showcases. I mean, we have so much of dancing that I would love to show y'all because Obviously y'all know this has been a dance practice, you know YouTube channel, but let's be real 98% of the stuff on here is dance practice So let's just keep going right so we're gonna keep going with that But let's add more dance stuff that you might enjoy. I want to look at different men and women in the choreography world I want to look at their work and I want to look at battles and so much more. So do me a favor Jump in the comments. Leave your thoughts and let me know what you think. All right, but Before I go, I just want to say well before I go before I go do some videos for y'all I just want to say thank you Thank you For showing love. Thank you for laughing with me Showing me positive love positive comments, you know, you know, there's negative trolling comments But I have not been paying attention to those comments I've been paying attention to the love and the support that I've been given to this channel We are on our way to 20,000 subscribers and I'm still mind blown that I'm about to have 20,000 subscribers. I was literally just happy that I got one subscriber You prefer a photo. I was only I was happy that I got somebody that didn't know me that say y'all love your video and Now that turn to one subscriber to all of y'all so Give yourself a round of applause for being amazing And showing support because it matters. You matter. Okay, so let me know your thoughts in the comments Get ready for some dope videos. All right, y'all take care. I'll see y'all soon. Peace


In a world full of discrimination, highlighting another one should not cause great distress. With an older population growing younger and the world being dominated by a younger demographic, the world as we know it has greatly morphed. Ageism has been defined simply as discrimination against individuals or a group of people based on their age. It was specifically coined to describe discrimination against older people and the aging process. However, currently ageism in some context is used to refer to discrimination against young people too. They've crept into that one too. With the advent of the internet and the explosion of technology and its age, there are tons of young people often below voting age that have acquired riches and are often the employers of older labour, their parents inclusive, or older people working in spaces where they can be considered endangered. With this comes a desensitisation of social graces, most especially the boundaries of respect for older ones. It is easy to blame personalisation for the loss of our core values on this side of the Atlantic, but can't this truly be avoided? Ageism is not only seen in the most obvious place, which is the workplace, but even in speech, telling a woman she's too old to wear certain styles of outfits, particularly ones that are considered sexy, praising older people by comparing them to younger ones. You look young for your age. Ah, you're young at heart. Are you really that old? Red-limbed products, anti-ageing products, services, wonder treatments, surgeries, and so on. Directories made headlines when, at 41 years old, she won a spot on the US Olympic Swim Team for the 2008 Beijing Games and became a five-time Olympian. Most of us would consider a woman of 41 to be old, but having beaten a 25-year-old to land this spot on the team, tourists challenged stereotypes about ageing and showed that people of all ages are capable of making great strikes. Like tourists, many people are striving for success in midlife and beyond, but they find themselves regularly struggling with varying degrees of age. And so, how do we go to exist?   Speak up. Speak up. Don't let your voice be drowned out.  You have gray hair for a reason. And after all, age gives liberty to speech. Engage in the world.  Follow the news. Live in the present. Look to the future. Show your children and grandchildren that you are aware of what is going on. Be positive. Attitude has a lot to do with how people overcome ages and relish the experience and wisdom that comes with age and put them to good use. Most importantly for me, be as independent as you can be and go for what you want. And I'm referring specifically to tourists.  Right now, I'm on another new journey at this age and I'm going to love it. Finally, exercise. Exercise not just your mind, but your body. Bottom line is we'll all get there. Be kind to yourself and others. I like this topic. I just, I want to kick it off. I like this topic because I am an older woman and I still have a lot in me and I just felt that I felt that a lot of people still struggle especially as females.  Once a woman is hitting menopause, there's also a gain for her.  So you can't really believe the world for treating us like that. But it's not true. It's just, okay, fine. It's a bridge to the other side and I really wanted to bring this out that you can live a whole life, you know, to the end. It might be different, but that's what youth do to us and how do we help even our youth to understand that you still need to, you know, look up to me because I will pass on the baton to you and let me say that was why I spoke about ageism and I hope somebody is, you know, somebody finds some hope outside his face and, you know, just go out there and live till they call you home. Over to you. Anyway, Madam Comfort Boots, I think first of all, I see you as a young woman, you know, I don't see any, I don't see any, but let me come from a general perspective. Yeah, it's true. Women are, in this part of the world, we have a mindset problem individual and also we have a societal orientation. You know, it's always hard on the women. Yeah, old men like you, see what they do. I'm using local parlance. But if it is the men, they don't really even talk about, especially when the men are wealthy, they don't care. Like today I was in a vehicle coming and they were arguing that this man at 90 can get married in a small town as well. It doesn't matter about a woman at 90. Why would she get married? You know, those gender-sensitive talk. I want to come from a general view. I just want to come from a general perspective. I want to use these opportunities to address the Nigerian police.  Identify yourself, bring your phone.  And some of them will go as far as telling them that me, we've worked for police for 30 years and no fear for them. So they just brand you.  So that's the sonsome of ageism. Are you saying that there must be a certain age you must get to before you were able to eat the fruit of your labor? Must you work and toil your age? Then let me come from another perspective. For this election coming, personally, yeah, even though they have been most talked about from America, Americans are saying we don't want Trump, we don't want Biden. On a general scale, Biden is old. We need the younger candidates. And in Nigeria here, they are shall come and go, we don't want older persons. These people have been here for a long time. We want young people. Personally, I think it's a form of ageism but I don't think we should judge people by their age. Why we should be concerned more is does this person have what it takes to deliver? Is he mentally and physically fit? Some young people are not mentally and physically stable to run office. So I don't believe in ageism. Everybody should be respected. And let me come from this other angle again.  Let me give you an example. Look at General Lushego of Asanjo. They had this problem for two years in Ethiopia. He was still giving the responsibility of overseeing the peace talk between the Tigri region and the European government. Sorry, the Ethiopian government. So Ethiopian government and the Tigri region to end the civil war effectively. Obasanjo is very old. He's not a young person. He's over 80 years, right? Over 80, maybe almost 90, you get. Now, aside from Lushego of Asanjo, we have other notable people. We just heard, okay, Professor George Obasanjo's past on when he was alive. This man has definitely as old as he was. You see him saying things about addressing Nigerian problems from unity to government, good policy, good governance. Let me go on. If you go to the religious sector, we have older clergymen. People like, let me use an example. You have someone like Bishop Pasadibiri. You have someone like Pasakumari. When these people speak, they speak with wisdom. So it means that when they were young, they used their youthful needs to develop themselves. So if you want to dream of being relevant in your old age, please use your youthful age wisely and be careful of what you eat. Take care of your health. Build your mind. So when you grow old, you'll still be relevant. And please, let's take care of the old people among us and also respect the youth. That's my thought. So my view on this is this. So because we now live in a very plastic society where people care so much about appearance, outlook and all of that, there's a sense in which people don't want to get old. And I think the psychological definition of that is gerastophobia. That is the fear of getting old. So there's a whole lot of research that has gone into this concept because we want to be around for almost all the time. But unfortunately, life is in phases and the creator has designed it that when we're born, as we grow older, we continue to decline. Just like any product that is produced will ultimately reach its expiry date. That is how man is also configured in creation. So we should see it as a welcome destination. So people should not get old as though it's a death sentence or they should not be stigmatized for progressing through, for their biological progression through time. So you understand. So I think in the context of this election we are having and the candidates on the ballot, I think the so-called candidates who have been sort of stigmatized or criticized for daring to run on account of their age, if they run the read these scripts, they will maybe... We should not get too excited. That is somebody out there who is speaking this way. So I agree that ageism is not a social disorder. As far as I'm concerned, people should be happy that they are able to live to see their gray hair because not everybody will have that privilege or that opportunity. And it's good enough that some NGOs are beginning to come up with a focus of catering to people who are in that bracket, catering to their peculiar and their special needs so that they enjoy their autonomous years as it were. Okay. Thank you, Rebu. And thank you, Comfort, for bringing this. So just like Elaga said, I think what we should be concerned more about is what do you have to offer? You know, legacy will live here because definitely nature will call and we have to live to prepare for that. I give an example. I don't want to lose politics because I have some sentiment around that. I give an example of football. Cristiano Ronaldo is right now, he's 38 years, but he feels even at the best that he cannot move the way he moves when he was young, but he feels that it's still something he wants to give the world of football and he keeps pushing, right? So if you also look at it from that perspective, like here comparing policies of the United States with Nigeria, what do these people have to offer? Is this something that will move us from where we are going, from where we are to where we are expected to be and where we are going, right? We should look into more of what do we have to offer and then at the end of the day, how do we even manage this set of people, not just to look down on them, you know? Even like you talk about the dressing, they should also be mindful for anybody who knows who have been able to identify their potential. I believe there are certain things they will put into consideration when they are moving, you know, and accept the nature as it comes. Thank you very much. Okay, so around fantastic views, I agree, I think I really like that one, that irrespective of the fact that, you know, you don't want to be discriminated based on your age, the truth is that even nature and life, you know, kind of does it for you, however, I think that's it for me, yes, but we should just be kinder, we should be kinder. We will all get there, so we all get there. Exactly, that's the message. Thank you very much. After the break, I'm not sure what you will give us his own topic.


Good evening everyone once again. It is a pleasure to be amongst all of you on this very very big day This is indeed the grand finale of sorts And I'm sure all of you be eager to know the results of these tightly contested awards as The chair of the jury comprising of some of the top marketeers in the country I can tell you that judging for these awards has not been an easy task We really had top quality nominations of some great marketing efforts put in by many of you and your teams Now as a leader of a telecom company which completed the world's largest integration in record time and did a massive rebranding exercise doing the pandemic with the launch of B. I Have closely witnessed the transformation in media consumer behavior and usage pattern More than ever before the small screen is where the eyeballs are With attention spans getting shorter We are seeing a lot of innovation in mobile marketing space as as brands fight for audience attention with sharply targeted campaigns based on data and analytics and So I applaud each of you and every nominee for a very interesting and some path-breaking work done by each and every one of you Now while judging these awards, I found some very very compelling and successful case studies But as for the awards ruled we could only pick a few winners gold silver and bronze So of hundreds of nominations and several hours of jury discussion We finally picked about 120 plus winners across categories. I congratulate each and every winner tonight and For those of you who didn't get any medals Remember the biggest medal comes from the customers and if your campaign won or was nominated here You're already a winner. I Would also like to congratulate Dr. Anurad Bhattra who has successfully put together the show to recognize brands and The people behind them and I wish him luck for the next year. Thank you very much and have a wonderful evening


So I know many, but not all of me here. I'm Sheila Wildman. I'm Associate Director of the Health Law Institute. And it's my honor to introduce today's speaker in our Health Law and Policy Seminar series, Professor Rivka Karni. Professor Karni is president of Ben-Gurion University, of the NetJet in Israel, a physician that she's held since 2006. Prior to taking up that post, she was Dean of the Faculty of Health Sciences at Ben-Gurion and Director of the Genetics Institute at the Soroka University Medical Center. I had that Professor Karni is the first woman to have been Dean of a medical school in Israel and the first woman to have been a university president in that country. Last year, she was chair of the country's Committee of University head. Apart from her impressive career in university administration, Professor Karni has made significant scientific contributions in the area of medical genetics. A graduate of the Hadasa Medical School of the Hebrew University of Jerusalem, she completed a residency in pediatrics, a fellowship in neonatology, and then a further fellowship in medical genetics at Boston Children's Hospital and Harvard University Medical School. Professor Karni is the incumbent of the Kregner Foundation Chair in Pediatric Genetics at Ben-Gurion. She's offered over 120 publications in medical genetics, and along with her team has identified numerous new genes and mutations, including one which has been named Karni Syndrome. Her research has focused mainly on clinical manifestations and molecular basis of genetic diseases in the arithmetric population of the negate. Professor Karni's many accomplishments will be formally recognized on Friday when this university will be awarding her an honorary degree. We're lucky that she could take the time to speak with us about the ethical and social dimensions of her work. The rough plan is for Professor Karni to speak until roughly one o'clock, but possibly later than that, followed by questions if we have time, we're going to have to wrap up by 1.20 to make way for an incoming class. So with that, over to you, Professor Karni. Well, thank you very much, Eva, for this kind introduction. And good day. It's not afternoon yet, right? So everybody, you're quite dispersed here. So if you feel comfortable like that, I need to go. And if any, every now and then, I will fix one group, bear with me. So it is really wonderful to be here. I just arrived at 1 o'clock, 1 AM in the morning. So if I have any kind of language barriers, lapses, whatever, I'm expecting new help. This is my first time, as I say, to Harry Fuchs. And I'm very thrilled to be here. And thank you for taking the time to come and hear my story about my research with the Benin community in Israel. Obviously, as a university president, I don't get to do too much of it lately. My last PhD student graduated about three years ago, when he fortunately managed to find a gene for the syndrome that I first clinically delineated 20 or 20 more years ago. So for years, we had the syndrome. We knew all the pathophysiology of this Karni syndrome. And only three years ago, we have identified the mutation that is causing this very unfortunate devastating disease. Just to show you that with all due respect to the wonderful technologies that we are encountering these days in genetics, in medicine in general, and genetics in particular, it might take some years and times before you actually get to the results that you are looking for mainly understand what is the molecular basis of those genetic diseases. So I came to the Negev, which is the southern part of Israel. As you can see here, this is the Negev region of Israel, the southern part of Israel, which is about two-thirds of Israel's enemies, only less than 10% of the population. It's vastly populated. It has a community of about 200,000 Bedouin, Muslim Arabs, residing in the Negev. We'll get there in a moment. Beresheva is the capital of the Negev. The Ben-Gurion University is located here. The main campus is in Beresheva. This is, I would say, a very regular picture for the Negev at this time of the year. When it's about to rain, it almost doesn't rain there. It is an arid zone or a dry land. But when it does rain, we have a lot of floods going on all over the place. Bedouin University is, in a way, kind of an oasis down there. It is located, as I said, in Beresheva. And it was created about 44 years ago with a governmental mandate to spearhead the development of the Negev. So the idea was to bring an institution of higher education to this part of the country in order to attract scientists, in order to attract scholars, and by that, to develop all kinds of academic research projects that will cater, will take care of the needs of a dry land to be sustainable in order for people to live there. But in that regard, the university has done a lot. Obviously, I do not have the time to dwell on all the fields and the fields that the university is involved in developing the region in general. And I will emphasize on my own research within the medical school. My research there, I came to the Negev right after I graduated from medical school in Jerusalem. And I came with a very ideological drive to actually help promoting the health system, especially via the community clinics in the Negev. And I was also interested in genetics. I was interested in genetics since I was 14 years old. And I pursued this interest very vigorously throughout medical school and later on. And I realized very, very quickly that one of the major health issues of the Negev was genetic disease birth defects among Bedouins. You know, in all other places, you find all other kinds of health challenges, either infectious disease or prematurity. But in that traditional community, the major health problem was birth defects and genetic disease. Now, what is the characterization of the Bedouin community? That, by the way, dwells in the Negev, but also exists in Jordan. In fact, a large degree of similarity between the Negev Bedouins and the Jordanian Bedouins emerged from the fact that they have common founders that actually came hundreds of years ago from the Arab Peninsula. Some of them came to the Negev, some of them to Jordan. And it is a highly traditional religious, but not that religious, becoming more extremist or more extremely religious in recent years. But throughout the years, it was more traditional rather than religious. So as I said, about 200,000, about 10% of the Arab population in Israel in general. This is a tribal community with almost 80 different tribes. And they have three very distinct social groups. One is the Lent Owners, the one that came the very old, the first to come to the Negev hundreds and hundreds of years ago. The peasants, the one that came later on mostly from Egypt. And the ex-slaves, the black Bedouins that came from Sudan were brought by shakes, Lent Owners as their slaves, and eventually later on developed their own community. And those three social groups are totally separated. I mean, they cannot marry within each other. In fact, they cannot even marry between tribes of the same social group, needless to say, between among groups. There are few founders in the sense that when they originally came, there weren't many, many people coming in. There were a couple of hundreds of founders that came there. And in a minute, you will understand why it is important in terms of genetics, in terms of medicine. Something which is very highly characteristic of the community is high rate of consanguinity. And the definition of consanguinity is marrying within the family. In the Bedouin community, as you will see in a moment, about 60% of all marriages are among first cousins. There are more 10% or 15% marrying within the family in a bit, in a less or more far away, but still within the family. Second cousins, third cousins. But first cousins, and sometimes double cousins, meaning sharing grandparents on both sides is something which is not uncommon in the Bedouin community. And by the way, this is the highest rate in all the Mediterranean, in all the far, in the Mediterranean area. There are a lot of consanguinity in other communities in the Middle East as well. But within the Bedouin community, it is the highest. Now there is another custom in the Bedouin community, which is polygamous marriage. Polygamy is not legal in Israel, but it is very often practiced in the Bedouin community. We don't have exact numbers, but the general impression is about fourth of the marriage in general are polygamous, having more than one wife, sometimes more than three wives. It means that the families are big. It means that there are many children there. And again, it has a very important effect on birth defects and genetic diseases. As I said, it is legal in Israel, but still the authorities in Israel just put a blind eye towards their trying not to extremely involved in their own traditional way of life. And lastly, there is a very high birth rate among the Bedouins. There are about 20% of the whole population in the Negev and more than 50% in the annual births in that Soroka Medical Center that was just mentioned before, which is the only hospital in the Negev, more than 50% of the births. And it is not unusual to see in an average Bedouin family about six, they say in terms of 6.7, not that we have a seventh of a child, but on the average, 6.7 children per couple. Just imagine in a polygamous marriage, you can get as high as 20 kids per family in one household. As I told you before, this is one of the early studies that we did with close to 1,000 people here. It's only part of that study where we found that the vast majority of the Bedouin population is actually married within the family. These are some scenery pictures of what you can see in that community, which was nomadic, or at least semi-nomadic, for many, many years and up until about 50 years ago. About 50 years ago, it was mainly around the nation build in this neighborhood. Israel was declared in 1948, Jordan in 47, Lebanon. At that point, they were more and more pushed to live in defined areas. But still, even in more official settlements, you can see a very modern house. But nowadays, there are more and more of them. But right next to it, you see the sheds, you see the tents, and the husbandry, camels, and all kinds of other animals that they grow. So some of them are of a very low-paid kind of blue color, either professional or not professional blue color workers. But unemployment is very, very high in this community. It can get as high as 24, 20, or 30%. Some more authentic pictures still. About 50% of the Bedouins live in former neighborhoods that the government has built for them. But almost 50% are still scattered in the Negev, in shanty towns, in encampments, in tents. And this is what you can find very often. I don't know whether you can see a baby lying over here, right there and then by the tent in the desert. So the ill effect of consanguinity is actually bringing about genetic diseases, the kind of, that we call recessive diseases. Are there any medical people around here in this room? OK. So I have to be a little bit more specific. In this kind of recessive diseases, each of the parents has to carry a mutation, which by itself, because we have two versions of the same gene, by itself, having one recessive mutation does not, should not cause any detrimental effects. So you can live normally and you don't even know in many cases that you carry a recessive disease. And it is estimated that about each and every one of us carries about six or seven mutations in various genes. However, there are in a single state, so we don't even know about it. But once there are in a double situation, then the disease is occurring, and the phenotype of the disease is being evident. So when you have the same grandparents, and if you are a product of consanguinity, your chances of having a recessive disease of parents of first cousin is 25%. And here you see a model of what's happening here. So there is a grandfather here that carries a mutation in itself, normal, no problem. Mostly the first generation that brings the mutations do not marry within the family. Then this union has two offspring, OK? Again, they marry out of the family, but they do transmit that recessive gene. Once there is a cousin marriage, and the two lines mean this kind of union, there is 25% of transferring both mutations to a child. 25% to have a genetic disease, which is quite high. So this is not unusual. This is what you see in the Bedouin community. And we've seen a lot of such family pedigree, because much of our research was basically relying on eliciting this kind of information, genetic information, genealogy for many, many tribes in the Bedouin community. And you can see here all the ingredients. I'm sorry. You can see here a case of polygamy, by the way. This is one man married to one, two, three women. And, consanguinity, first degree, first cousins married.  I'm sorry you don't see this line, because here you have even many more affected kids. Because again, there are cousins of double first cousins. And this is not the most complicated family tree that we have encountered. So in the early 1990s, when the human genome project started, we have embarked on a systematic identification of genes in the Bedouin community. And the idea was actually coming from, I would say, two different considerations. One of them, as it always the case in research, a matter of interest. We were very much interested in really elucidating the molecular basis. What is going wrong with the DNA? So to bring those very, some of them, very severe devastating genetic diseases in the Bedouin community. And the idea was that the more information we get from those diseases, the more information we can provide the world with. And as a human genome project evolved, in fact, we have supplied the world literature with a lot of insights about very unusual genetic diseases, however, that had very much to do with other common diseases. So if you have a genetic disease that affects the kidneys, you can definitely look at it as maybe a way to look at more common diseases that some of them are being brought by some kind of a genetic change. So when we decided upon the first project, we have chosen one disease that was highly prevalent in three different huge, big tribes in the negative. I'm going to tell you the name, but obviously, you won't say anything to you. The Badder Beal Syndrome, three different tribes with many affected people with obesity, with progressing blindness, which is pigmentosal, with diabetes, with some kind of genetic, of congenital defects, having extra fingers, and other features which could be seen in other more common diseases. Obesity is very common. Most of the obesity are not genetically. Most of the diabetes are not genetically determined. But the idea was that once we get to the gene that causes those diseases in a recessive state, maybe those genes will be playing a role in common diseases as well. So that was the idea, first of all, to go systematically, look at the genes, find the molecular basis, having more ideas and information about those very unusual diseases. But then in the first place or the second place, provide the community with means to lower the prevalence of genetic disease. Meaning, finding a way to do genetic testing, both to carriers and also to pregnant women with children at risk of having those genetic diseases. So the idea was twofold. One scientific and the other one social. And we felt very strongly that our role is really to bring about a change in the situation in the Bedouin community, which was, if we go, if we look at infant mortality, meaning the death of children during the first year of life, you can appreciate the huge difference between the Jewish and the Bedouin population. This is going back to 2002, but in fact, we started our project in the mid-90s. I didn't bring the data before them, but they were very similar. So to begin with, we had around 18 cases per thousand of dead children during the first year of life. While in the Jewish community, you can say the number is about five and even less than that with the years. At the end of my talk, you'll see what caused actually the decrease over the years, a very dramatic decrease. But still, in 2012 still, there is a huge gap, almost threefold. And the reason for that is that when you look at the Bedouins and the causes for infant death within the Bedouin community, you can appreciate the fact that about 49% of the causes for infant death are due to birth defects or genetic disease, while it is only 23% in the Jewish population. The Jewish population, most of the cases causing infant death is prematurity. This is not the case with the Bedouins. Most, about 50% of them. So just imagine lowering this percentage will almost bring their numbers to what we see in the Jewish community. By the way, they are very high. They are relatively high to the Jewish community, but in terms of the neighborhood, numbers that you see or percentage that you see in the Middle East in general, they are still very, very low. In other countries, they are much higher. So in parallel to the bench work that we are doing for many, many years, bench work, meaning using all technologies to look into the molecular, the genetic basis of those diseases and looking for gene. And we started with very, what is perceived today, very basic, very old-fashioned, very quote unquote primitive methods, linkage analysis, which was highly prevalent in the early 90s. Now nobody is doing this or almost nobody is doing those kind of things. The technologies nowadays are very advanced, very robust, very high throughput. You can do it in a very short time very large samples what took us a year at the time, to realize to find the first location of the first gene takes now 24 or 48 hours. So we have witnessed this kind of progression and throughout the years. I don't feel that old, but still, I feel like I managed to be in three different centuries in one lifetime in that regard. So at first we were using linkage analysis, which didn't really point out the gene itself but the location of the gene. But when we did it in a certain family, when we found in a certain family location, we could readily, it was readily available for them to use it as a mean for prenatal diagnosis and carrier detection as well. So even then, even then before we had a very precise mutation which means if you have the mutation and if the infant has the double mutation, there is a 100% that we will be affected. Even then we could say but not in a definite reliability. So the reliability of the test was about 98, 97% and I'll go back to that in a moment. So the idea was in parallel to that benchmark biological research to develop a community-based program to reduce the rate of birth defects and hereditary diseases in the negative population. At first it was a program by us, the medical school, I was leading this program together with the department of epidemiology and the department of sociology and anthropology in the university. Later on in the mid-90s, but in the beginning of 2000, the Ministry of Education has undertaken that, seeing that we were very successful, undertaken this kind of disease and also adopted some other recommendation that we had and I'm going to tell you about them in a moment. So what were the objectives? They were to increase knowledge and understanding of the torrential effect of consanguinity. We didn't want to go directly attack consanguinity. We had very bad experience with doing it and the bettering community in other communities as well, but especially in the bettering community. Years before we were still very young and very naive. We had this tribe with maple syrup urine disease, some metabolic disease that actually kills babies during the first month of their life. And we were going back to the tribe and we were literally educating them on the ill effect of consanguinity and we said, and we preached, we said you have to stop it. You have to stop marrying within the family. So what happened was that the men, the males, went out of the family, looked for wives, out of the family and the women were first of all remained, I mean they didn't have enough cousins to marry, so they ended up being second and third wives. And this caused a very, very big issue in the family. We felt very bad because in a way we were undermining the very basic, very delicate fabric at least the one that was somehow present throughout the years especially between the young and the old generation and we've decided this was not the right way to go about it. But still we thought that we need to educate the public as well as the young generation about the issues involved with consanguinity and of course how to deal with it. So to promote the use of prenatal testing and early on because we realized very quickly that termination of pregnancy even for a very detrimental disease for very devastating disease is not an option unless, and this is what we realized by really working very closely with the community that if we managed to do it before the 120th day of gestation then there is an option for pregnancy termination of a very severely affected fetus because according to some, not all religious leaders but according to some of them the soul enters the body at around 120 days of gestation and up till then the fetus is not regarded human being and actually if the disease is bad enough you can consider pregnancy termination which meant that we had to really design for some kind of very early prenatal diagnosis as you know amniocentesis doesn't go before the 16th week four months so we had to plan it early on by colonic villus CVS, villus vepsi or even earlier with prenatal, with pre-implantation genetic diagnosis. Another objective was to do carrier screening. Again, healthy carriers. So to allow for the matchmaking process to incorporate genetic information. I didn't mean, I didn't mention but I should have mentioned that many of those consanguinous marriages are being prearranged. So they are being prearranged between brothers, mostly brothers at a very young age and at a certain age they have to implement this agreement and the couple marry. So what we have offered them is to give them the genetic information about the carrier status in order for them to be able to do a more calculated kind of a matchmaking. If you matchmake between either non-carriers or where only once carrier, you actually still convince the risk of having an affected child. Only if two parents are carriers then this is the case. So use the genetic information in order to modify your decision about arranging those marriages. And then of course as I said carrier screening to allow early prenatal testing within families at risk. Meaning to change the whole habit of using prenatal services in general. Using prenatal services among the Bedouin and not the same way we see in the Jewish population they tend to come very late to have all those checkups and by the time they get there they're already seven or eight months pregnant and there is nothing you can do. So the whole idea was to educate and change attitudes towards genetic diagnosis. I'll go very fast through the audiences that we had or the public that we approached. So within the years we managed to accumulate genetic tests for over 30 diseases. And this is something extremely, extremely unusual. There are very small, very few communities where you have so much genetic information on the community. Even in the Jewish community you have like 15 or 16 kind of diseases that you can diagnose. Here in the Bedouin community we found nowadays it is closing to 40 new mutations not only new some of them known diseases but new mutations in the community, in those tribes. And for all of them we can provide the genetic test and it can be provided only in our lab because other labs obviously are not dealing with this kind of disease. Since 2002 those tests became free of charge that being covered by the government and again it was, we were very instrumental in pushing forward the idea that in communities where there is a certain higher percentage than normal of the disease you should offer this kind of free tests which eventually will reduce costs of hospitalization, longer hospitalizations, very complex kind of treatment for children that nowadays even though they have really very serious genetic disease can survive because of all the modern kind of care that we can provide them. We have produced a lot of reading materials in Arabic discussing the diseases in their own terms, own ways. We have targeted, we have made referrals much more easier to the community. Women in this community do not go freely they need to be escorted by their husbands or by their spouses and some of them you know are not readily available so we provided them with those services on the premises in their communities. And I'm not going to talk about the last thing which is a bit more time consuming. Some pictures I should show you. We made it very clear that we want to use people from their own community. The best people to communicate this kind of ideas and information, the best ones from the community. Obviously this is not a very highly educated community but we managed to bring young people, mostly women. High school graduates that we trained in the very I would say contained way. They are not experts in genetics in general but at least to convey certain ideas and certain messages that we wanted to convey. This is one example of a young woman do it in the mother and child health clinic. See the women sitting there. I mean this is the meeting place where they come for immunizations with the kid where they come from for their prenatal care. And obviously it has become some kind of a social gathering as well. And in all those opportunities we had women educating them in various sessions on various genetic issues. Now we targeted also high school students thinking that this is the future of this community. We produce a duke a drama very nice film that students, young people can relate to it in a very empathic way about a constant community. We have created a new curriculum in human genetics at school, lectures, workshops about those various toppings. The cousin marriage, the advantages because there are some advantages to cousin marriage as well but the ill effect or the potential ill effect of them all kind of issues, all kind of facts about carrier screening about prenatal diagnosis using folic acid, et cetera. We also addressed the religious political leader because we thought or realized that those leaders have much influence on the community, not on the whole community, but at least in their own tribes, own families. So we have designed courses in genetics to religious leaders. Obviously this was very, very challenging but we managed to do that. Leaders of the community now participate in our steering group, steering committee for the project. And since three or four years ago we have a leading religion figure joining the project staff and he's much, he's very instrumental and really conveying the ideas to the public. Okay, we're targeting men, all the women, community events of all kinds, training community, activists, all around the genetic messages and also educating the Jewish health care social services professionals. Many of them are still Jewish. We have more and more bedwing professionals, nurses, physicians, social worker, psychologists more and more. The vast majority are still Jewish and we have about educating them vis a vis you know, both the religion, tradition, all kinds of myth and conceptions within this community. Now, what were and are still the major changes coping with doing both research and community interventions in this very specific community. Now, I have chosen some very clear kind of issues that I think you should be able to relate to because they are coming from our Western culture, Western society kind of issues that are very, very strange and not understandable to these kind of communities. First of all, the informed consent, something which is so natural to us. There is nothing that we do nowadays and we don't do it for many, many years without having informed consent, meaning that you have to inform the patient either before he participates in a study or get any kind of treatment or procedure, whatever. So informed is something very tricky there.  This is something that they don't really comprehend. And we had to really find a way how on one hand, not to be directive because you shouldn't be directive and on the other hand, you know, provide them what they really expected us to provide them with. So another thing that was created to inform consent was the idea of autonomy, for example. You know, we would go to a family and either ask for blood samples, for example, to write an informed consent or, you know, after having an education session, give them an informed consent that they would like to participate in these kind of activities. And then would come the father of the household who said, okay, I agree. I agree, not only for myself, but for everybody, all my kids, you know, my wife, et cetera. At first, we used to sit there for hours explaining what is autonomy. You know, everyone is entitled to her own rights or his own right to decide about his or herself. It was useless, it was useless. Then, many of the participants are illiterate. So one thing was consent verbally. The other thing was to sign. I mean, the idea of having to sign on something that you heard, you couldn't read, but actually somebody else read it to you and somebody else is not really from your own community, somebody from the Jewish community are not going to open this stuff because this is another very sensitive issue here. It was totally unacceptable. So the household was ready to sign up for everybody or not for anybody or not at all. And we ended up by losing a lot of information on people that we couldn't get informed consent and we couldn't really get, you know, the real approval by the participants. Confidentiality goes together because for this community, I mean, knowing what is the genetic status of my brother's son, something very natural. Why shouldn't I do? I know what's my son's genetic status, whether he's a carrier of mutation. I know, I want to know what is the carrier status of my brother's daughter. So to be able to decide whether I want to match them or not. And the idea that this kind of information is going to be either her father if she's a minor or herself if she's already an adult was very, very difficult to understand. And usually, can imagine you're sitting hours on hours with people in the community trying to explain them. And I would say with not much of a success. Test my reliability at first when we only had those link geneticists was nightmare, was nightmare, you know, for couples who understood that their a priori risk was 25% to have an affected child. To be told that now there are the chances only 2% because the test liability is 98% but there is still 2% risk. I mean, it was such a relief, you know, going down for 25 to two was a big deal for them. But for us, 2% was really not highly reliable or the test was not highly reliable. So again, another something very, very challenging was the idea and conception of carrier versus disease state. The idea that the carrier is something, somebody healthy that can transmit the gene, but in himself or herself, our health is very, very difficult. Especially in this kind of a community where the women are the lowest on the social ladder, even lower than children, the lowest. So automatically, they were always blamed. So a carrier woman in that community has a huge stigmatization on her. She's highly stigmatized and have tough time finding mates, although she's perfectly normal, perfectly healthy and with a non-carrier spouse would have normal children. And the whole gamut of mis-prejudices and misconceptions. For example, you know, the term in Arabic for amniocentesis says it is mayat aras, the water in the head of the child. This is the term for amniocentesis. That implies that you have to get into the head of the child in order to take out the water. And you know, they couldn't care about our explanation. It took us years to really take out this term from the discourse and talk about amniocentesis in the right way. Mis-conceptions. You know, there is no term for gene in the Arabic language, but it sounds very much like gene.   You know, the idea that there are some demons over there and obviously a great deal of suspicion about, and this was another thing that was going on within the community, about a whole plan of the Israeli government to reduce birth rate by way of, you know, eugenic kind of a mission, which was obviously total nonsense. At the end of the day, we were, I think, very, very successful in conveying data and information. We had a lot of evaluation, study evaluation, and the cognitive perception of people, the way they were educated about genetics really made a big deal and a big change, both among students and among professionals. They could understand the facts, they couldn't understand the idea, they could explain you the science behind it. But once it came to the practices to actually decide or actually agree to go through a prenatal diagnosis, this was entirely different. It means that decisions about prenatal diagnosis in general and about prenatal determination in particular, because unfortunately this is what we could offer them right now, there and then, we realized that the factors in such a traditional community are not the ones that we would necessarily anticipate. Well, obviously, the level of location really was very much kind of a factor that really determined. The more educated the couple were, obviously, both of them, the more they were compliant with our counseling, with our suggestions and with early prenatal diagnosis. Gendered, women were more open to that than men. Obviously, women are the ones that take care of the children that are involved with the burden of having an affected child. The strengths of religious belief also correlated with the results, the more religious they were, the less open they were to prenatal and abortion. But the two most important factors were the ones in red, the severity of the familial disease and the number of unsuccessful families. So obviously, the more affected, the more complicated was the disease. The longer the survival of the affected person was, and the bigger the burden was, the more open they were for prenatal diagnosis and wanting to prevent it. But also the number of unsuccessful pregnancies. Because children in general, and male children in particular in this community, is something extremely, extremely important. One woman paid it better having six children than not having children at all. Women are perceived as, the world is perceived as having children. This is the mere existence. This is why they are there. And women without children are being treated, I would say, as a very lower, or extremely underachievers. And of course, they face the risk of their husbands taking third or second or third wife. And what is very, very scenic in that is that usually the second or third wives are not blood relatives. They are women from out of the clan, out of the tribe. Their chances of being carriers of the same gene of the family is very low. So they are having healthy children, just to prove that the blame was on that woman, rather than on the union. So we had really to cope with all these kinds of ideas and thoughts, and as much as possible to protect the women over there. And actually from that kind of experience that I had, emerged my strong belief that one of the major goals should be increase the education of women in that community. So thereafter, it wasn't consequential, but earlier we have founded the first organization to promote education within, better in women in the community, and moreover higher education among those women, in order for them to actually take a more central role in their community, in promoting, and this kind of knowledge and this kind of participation, but also in order to promote their own status. And what we are very glad to tell everybody that we were at least partly successful. So if you go back to this graph, you see that between 2002, in a decade, we managed to bring down the infant mortality in the women community, I would say significantly. Not enough, there is a lot to do still because we are talking about very small numbers. I mean, the percentage look high, but the numbers are small. And now we are actually monitoring each and every case. So each and every case when we have a child born with congenital defects or on genetic disease, we go back to the family and we look what was going on throughout the pregnancy. Were they getting the right counseling? Were they getting the right services? But obviously something significant happened there and the reason was in fact that we managed to bring down the congenital anomalies in genetic disease, I think in a significant way, not again the way we wanted to do it, we wanted to appear, but still I can tell you that in four years, we have managed to bring it down. It is now less than four and the aim is of course to bring them to the ratio that you see in the Jewish population. So it is a kind of a happy end, but we're not almost there already and we are still very active with this extremely comprehensive community-based program, project in the Bedouin community. Thank you very much. I hear you have questions, but it's... Diane. I mean, you talked somewhat about the ethics of abortion in general, but you haven't really talked about the ethics of abortion specifically for genetic disease. Can you talk about that? Yeah. Well, that's a very general issue. This is a very general issue and interestingly enough, the Jewish faith is in fact very open, very open to the possibility that pregnancy with severely affected foetus is a burden on the mother. The mother is the center of our concerns and if she wishes for an abortion, it is fairly easy in Israel to get pregnancy termination. Obviously, this is not the case in the Orthodox community and this is not the case in the Arab community. So we do cater to two communities in Israel that such an option is not on the table at all and there is another program in the Orthodox community called Dori Sharim, a very effective program that actually managed to bring down the Ashkenazi disease in this community to almost zero. But I could talk about it for an hour now but this is, I think, in essence, what I can say. Oh, I'm sorry. Now that you know the molecular relations of Kami syndrome and perhaps others as well, do you have an opportunity to look at the known areas to see whether that gene in single state is affecting the occurrence of diabetes and obesity in that population? It's a very, very important question and this is actually one of my huge disappointments because although, for example, in the mother-bed syndrome, we were the ones, the first one to start studying this very rare syndrome and now there are huge plethora of studies on that syndrome. Yet almost none of the pathways that have been identified till now, there are a lot of pathways because there are now like 16 genes involving that syndrome, 16 different genes. None of them are very prominent in diabetes, for example, or even in obesity. They have something to do with the, I would say, population of genes that involves with all these things, but they are not major. This is one very, however, we do have one disease, growth hormone deficiency in a Bedouin tribe where we identified the mutation in short sets of people, very interesting. First of all, we thought about it because we observed many short people in that tribe that were not as short as affected, but shorter than average. And then when we checked the mutation in a general population, we showed that it is more prevalent in low-stature individuals, low-stature of unknown origin, definitely. So this is the only place where I found a genetic mutation involved in a common, much common trait. So I was just wondering whether the success of your initiative is different between types of Bedouin communities. So between the community that's settling their shell and between the community that's in illegal settlements and communities that still practice thematic lifestyle and whether that is also affected how the Department of Education has taken a long year of treatment. So obviously we have started in the largest city of the Bedouin community, the Rahat, because there the services are much well-organized in the non-recognized settlements that almost no health services or not something which is well-organized. But in terms of genetic diseases, there is no difference, very interesting. No difference whatsoever. There are maybe one or two tribes that don't have any genetic disease and in fact has a very high education rate, meaning maybe it has to do with a more higher intelligence, whatever, we never touch that. But for all others, changes are being scattered in the non-recognized as well as in the recognized places, no changes whatsoever. We started our project in that community, but now the project is all over the place. So it includes also the other neighborhoods, the other former neighborhoods, but also the non-former ones. Okay, I think we're going to have an onslaught of a class very soon, so let's just welcome to thank you so much for this rich and interesting set of reflections on your work. You've given us a lot to think about and to take away and to reflect further on before we break. I want to remind people of our next seminar coming up on November 1st, which is Kim Pate. The title of her talk will be Prisons, The New Asylum. So I hope that you will come back to that lecture. But for now, thanks once again to Professor Karn. Thank you.