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Title : standard furniture dimensions australia
standard furniture dimensions australia
it's right around 12:30, so we might kick off. there's people just coming in. but i'll pick it up aswe go through this. my name is mick gooda. i'm the aboriginal and torres straitislander social justice commissioner of the human rights commission. and as we stand here today onthe lands of the gadigal people of the eora nation,i pay my respects to them, their elders past and present.
and salute them for their strugglefor their country and their culture, to keep it alive in the biggestcity that we have in australia. it's appropriate that we do thesewelcome to countries because what we're gonna talk about today isactually something really modern. it's dna, it's genetics,and we've just got to work out how do we fit the concept ofus being here for so long in with this new science that's almostevolving on a daily basis even. so i'm gonna talkabout it a bit more. but even since we've started thisprocess about 2.5 years ago advances
have been made in geneticsthat'll just astound you. so where i'll start is,i was approached along with a group of other peopleincluding marcia langton, mick dodson, anne anderson,carrie arrabina, about a collection of 6,000samples that were held by anu. and the tissue samples, whichbasically were blood samples, and if you go down and have a look, simon will talka bit about the little bottles, about this high, that were collectedup to 50 years ago across australia.
and again, simon will talk a bit more about theproject, what it was meant to do. it was back in the 50s, a geneticsproject, a worldwide genetics project, but we had this specificpart about indigenous people. and of course, our mob inaustralia got caught up in that. now we sort of take a view,and the general view is that the tissue samples were collectedin line with the ethics of the day. so we can't find any evidence ofpeople being strapped to beds and blood taken away from them.
but there's generally,when we've gone out and talked to people about it,we've generally got a really great reaction from people with lots ofgood memories about the people. there are actually a few of thepeople still alive who actually went out as young doctors to go andtake these samples. so we'll get into that a bit. we'll talk about some of thepossibilities of genetic research. we'll talk a little bit about thehistory of where we are in australia with research with aboriginal torresstrait islander people of this kind.
we'll talk about the roleof the national centre for indigenous genomics, which wascreated out of those consultations that were undertaken about two anda half, three years ago. but as we started on this process, the first thing we decided todo was to make sure we engaged the people whose tissue sampleswere taken all that time ago. and we know that lots ofpeople have passed away. we've got extensive lists of namesof people who had samples taken. one thing they did waskeep good records,
so what we have are threeparts of this collection. one is the blood samples. the second is the records ofpeople whose blood was taken. in fact, there's some of them arereally useful, because they've drawn up the whole family connectionsin particular communities. didn't happen in all of them,but some of them. you go out andyou talk to people now about them. and they wanna holdthose records cuz they're pretty important about who'srelated to who and all that stuff.
and the third part ofthe collection is the massive number of photographs. and we'll show you some photographstoday, you'll be amazed. i constantly say there isa photograph of this guy, i reckon he's the coolest inaustralia, taken about 50 years ago. he's just cool, this bloke. when you see him you'llknow what i mean. so people are really interestedin the photographs and all these records.
and our job is to make sure theygo back to the proper people. so we embarked on this, all the scientific stuffwas happening on one end. then we decided to embarkon this consultation. and our first view was,we have to go and talk to people and let them know what we've got. and our first place we went to wasfitzroy crossing in the kimberley, and it's lucky my brother worked upthe sea in the kimberley law and culture center which is, whichbrings all the kimberley old people,
war men, war women to talk about culturalstuff happening in the kimberley. and we met with them, those werethe first people we met with, and funny enough, outside theirbuilding is about three containers. two containers of remains that havebeen brought back from overseas, out of museums,across europe, basically. a lot of them have been reburied,but there's lots in those containers that they know theycome from the kimberly but they don't know whichcommunity they come from.
we think this project can help themfind that out as one of the benefits of it. so we just started really talkingto people about what we've got. and we've taken our view. and even now, simon,i don't think we've, people wanted to signup to it straightaway. we told them upfront, we don't even have the consentforms developed yet. so we haven't even got to the pointof thinking about what they're gonna
give consent for,we just wanna talk about it. so that time takenactually produced a lot of confidence andtrust in what we are doing. so the concept is, people won'tmove from closed collection to open collection, until we get permissionof either the people themselves or the people we are told speak forthose people who have passed away. so we've got thisprocess happening now, a fellow from fitzroy crossingis helping us there. there's a lady inqueensland helping us,
and what happened in the top end? we are working with? >> we're workingwith the [inaudible] >> yeah, the machado-joseph, i don't know if you've heardof the machado-joseph disease up in the top end. we think this project canactually help advance some of the remedies to how muchthose people suffer. can i welcome our president,julian tricks, sorry, julian.
>> so what it's turned into,i think it's gone down two tracks. one is really the scientific basisof analyzing the dna and all that, but the other side is actuallyengaging with the aboriginal torres strait islander community. and i'd venture to say we'reactually designing the gold standard. lots of resources are going into make sure we engage properly. we've got a young womanfrom north queensland, azure hermes, formallyazure peacock, working with us.
and she laid the engagementstrategy along with those other people as we go through acquaintingthe top end and the kimberley area. now, it might seem strange, but there's actually no regulationaround this about the use of dna. particularly from the aboriginaltorres strait islander perspective. in the 90's there was a projectwhere our mob weren't involved at all. we called it the m part project, aboriginal torres strait islanderjust excluded themselves from it.
so we were coming in with a veryfraught reputation around genetics and aboriginaltorres strait islander people. and funny enough, because i reckon we're the oldestpeople in the world, the geneticists around the world just want toget their hands on that stuff. now simon got online one day and actually boughtaboriginal dna online. so there's no control. so part of the thing we'vegotta build out of this
process is actually how dowe regulate the access and the use of aboriginal dna. and so what the principleswe've taken forward for the national center forindigenous genomics is every step of the way, aboriginaltorres strait islander people will be in control ofthe decision making. whether it's the board ofgovernance, i chair it, and there's some,on the board with me is mick dodson, three young researchers,doctors, misty jenkins,
she's an immunologist. just moved from the peter mackinstitute in victoria. i'm not sure where she is now, it's only opened in the lastlittle while simone reynolds from queensland institute ofmedical research and nari brown, a doctor in her own right butthen is a phd scholar as well. we've got these three young women onthe board who make sure, along with mick and i, that the aboriginalview is put pretty strongly. i think it's safe to say there'sno one amongst the five of us,
who are actually shrinking violetswhen it comes to putting our view out there. but we're joined by simon, who's the director of the center,donald charmers, who is an ethicist, really important that we getthe ethical framework around us. mike riccardi who's the deputy vicechancellor of anu research and i think that's about it. so, that's the group. we've got a research advisorycommittee which will eventually look
at the use of the dnawhen we're ready for it. it'll be a majorityof aboriginal and torres strait islandersin charge of that. we've established what we calla collection access committee, who actually gets tolook at this stuff. that's gonna be majority aboriginaland torres strait islander control. so we've actually got to buildthe confidence of our mob out there that as we go into this,it's gonna be done right. and you can't emphasize too muchabout getting it done right.
where we go with this,look, i don't know, and as we finish, i think we'regonna have a q & a session. and some of the things i've done,i'll some of them. they think you can go andget your dna done and you'll work out whetheryou're aboriginal or not. that can't happen,as i'll explain why. we're also, i'm getting calls andi think a couple other people are getting calls to workout right of title claims, can i connect myself to an apicalancestor somewhere using dna.
benefit sharing,if some great cure was found for something out of this,it could be how to actually make sure benefits are shared back tothe people who participate in this. there's a great book you shouldread, it's called the immortal life of henrietta lacks, who was anafrican-american woman in the 50s. and she died of cancer andthey call it the immortal life of henrietta lacks is becauseher bloodlines, cell lines, have been used all around the world,they've gone to outer space. and when i read the book,
the amount of benefit that accruedto her family is basically zilch. i think the first thing allthe pharmaceutical companies did was pitch in andbuy a headstone for her. so we've got all thesemoral dilemmas as well. i was reading a coupleof years ago about, there's this family in australia,it's not an aboriginal family, who have this marker in theirgemetic makeup that if they've got this gene, they'll have an 80%chance of getting stomach cancer. and i read that the familytype divided into two groups.
one who wanted to know whathappened if they had the gene, and the other who didn't wanna know. that's, we'll just find out ifwe get cancer, work it out. the other group who wanted to know,get divided into two groups. people with the gene,the people without the gene, then it goes to the peoplewith the gene, what do you do? and that stage, i don't know ifthere's any advance being made but the way to deal with that ishave your stomach removed. pretty dramatic thing, you wouldhave seen people like angelina jolie
being found with that breast cancergene and had a double mastectomy. deal with it.so we got all these things thatare gonna confront all of us in this genetic world. we worry about,i've got my genome map. i don't think we'regonna show it today. we worry about the moral dilemmas ofif you've got a marker for cancer, how will that affectdisclosure statements when you're getting insurance forall sorts of things?
is it better not knowing orthen sign the insurance statement, then go and get it done? these are the dilemmas we'reall going to confront, but we think they'reparticular dilemmas for aboriginal torres strait islanderpeople in this as well. so i might get simon to join meup here and he'll go through what actually we've done sofar and where we've come from. but then i know it sparked myinterest about the possibilities, the potential forthis sort of research to benefit
our mob particularlyin closing the gap. and there's also a moral argument, that given that we cannotaccess the whole system here. but again, forindividuals getting involved, it's gonna come down tothe individual saying yes or no. so if you can make simon welcome,and he'll take us to the next step. >> [applause]>> thanks very much, mick. and i'll reserve my acknowledgementsto later on, as you'll see. how do i control the slide?
can you make it full screen? okay, should be possible but, okay. as mick said, he chairs the nationalcenter for indigenous genomics at the governance board of whichi'm director at the anu, and i'm gonna go through what we do inmore detail following on from mick. but first perhaps,a little bit of background. there must be a wayto make this big. >> [inaudible] if you'llmake it full screen. >> yeah, and also, how do i move on?
i use a mac, i have absolutelyno idea what i'm doing here. so maybe if you can control it. get rid of that [inaudible] works,sorry. while that's happening, there are very large projectsoccurring around the world. there are major initiativesto understand how our genomes are involved in affecting how ourenvironments have influenced our health, and how genetic variationbetween people affects that process. this is underpinned by largedatabases of genomic and
related data, so this isan example of big data, which is being addressed in different waysthroughout all sorts of areas. particularly sensitive and importantin this area because it's very personal and relates to people'shealth, and to their identity. these large data sets are criticallyimportant because they provide essential context forinterpretation of individuals. as mick said,his genome has been sequenced. mine's been sequenced. we can't make any sense of that
unless we compare it with othergenomes and so there are literally millions of people havingtheir genomes sequenced. these are important forinternal quality control purposes. the more backgroundinformation you have, you can see where theremight be errors and so on. they're essential for discovery and scientific inference in relationto disease or anything else for that matter, and forclinical interpretation. i'll give you an exampleof that later on.
these are being built fora disease specific but also large national projects. it's almost like the airlines, everycountry has to have one of these. and the two, perhaps the largest andbest known are genomics england, where they're sequencing100,000 people. that'll be exceeded massively. and there are, of course, otherprojects within the united kingdom. scotland, not to be outdone, the national institute of healthin the united states, again,
not to be outdone, are lookingto sequencing a million people. and the important point inthe headline there is that this being done to form the foundationfor a new way of doing research through engaged participants andresponsible data sharing. so there are a lot of new issuesarising in this context because there is a need to connect withpeople in a rather different way than it's been done in the past. both from the point of view ofclinicians and researchers but also and to retain thatconnection over time, and
also to work out how to share datato make it more and more useful without compromising issues aroundprivacy and related matters. the point here is that the currentfocus, for historical reasons that you all understand,is on rare diseases and cancer. it's extending beyond that, but that's where the actionis at the moment. but it's based on people fromeurope, ancestrally from europe, whether they lived there or not. now, you can tell a lot fromsomeone's genome about where
they come from. and this is, in fact, my genome. and you can compare that bycomparison to data that's collected from other populations aroundthe world and this list here is, it doesn't really matter. but the point is that, this isessentially blue, cuz i'm british, i'm completely 100% british,but i have a colleague who's from colombia andhis genome looks like this. i should explain these are 22chromosomes down here and
you're painted on them thecomponents of those chromosomes that come from different ancestry. so my colleague and friend marishohas african american, west african. he has largely native american, some iberian peninsula spanish andsome jewish, both sephardic andashkenazi components there. in other words,he's a fairly typical colombian. he identifies, by the way,as being colombian, and so you can tell that these components,now this has implications for
health because thereare subtle differences. these are most important in rarediseases and also in cancer. and so this results,this means there's a disparity, because if we restrict ourknowledge to people from europe, then people from europe willbenefit disproportionately and other people will fall behind. there are large initiatives ingenomics and health in the americas, and these are initialfunding to these projects. and there is a big project inafrica, international project,
and that one has beenleveraged substantially. now the quote at the bottom isfrom the h3 africa consortium paper that was publisheda couple of years ago. and it says basically, if the dearthof genetics research including africans persist, the potentialhealth and economic benefits emanating from genomic sciencemay elude an entire continent. so if people are left out,they will lose out. if we look at what we know aboutindigenous australian genomics, the maps of genome diversityaround the world generally look
a bit like this. in other words, sometimesaustralia isn't even on them. but certainly, when it is, new zealand isn't,new zealand is on that one. and when it is, there's noinformation available from there. so, a similar investment we wouldsuggest is needed to extend the health and other benefitsto indigenous australians. but, that isn't a simple process,for the many reasons that mickhas already outlined.
and i'll give you just a couple ofexamples of what i was saying about the local implications of genomevariation in relation to health. this is a study a couple of yearsago on inuit people of greenland, and the map there shows the villageswhere the samples where obtained. and in a genome study,a variant of this gene that's name is not important, that hadnot previously been identified as being associated with diabetes inany way, was found to result in a tenfold increase in the riskof diabetes in inuit. now that is a huge effect, andhas all kinds of downstream
implications in terms ofdevelopment of therapeutics, but also in terms of treatment. and that graph at the bottom justshows that in a different form. it also associated withinsulin resistance, and glucose levels, and so on. the point is that this variantoccurs nowhere else in the world. it occurs in 23% of inuit,it occurs nowhere else. i believe there is one japanesesample that it was seen in, but that's at a level where you couldprobably consider as error.
so it's essentiallyspecific to this region and it has this huge health effect. the direct implication of that is,as nick will tell you, because i was with him whensomeone said this to us jointly, i do everything my doctor says. i have diabetes. they keep telling me i'mnot following the regimen. i'm not doing what i'm told to do. well, my doctors i do,but it has no effect.
the point is that in these people,to a large extent, diabetes is a different disease and needs a different regimeof treatment for it. now, we don't knowthe extent to which that's more generally the case. but it's certainly a goodexample of why it's important to recognize this. there are these local differencesthat may be very important. a study last year of a familywith a genetic disorder in
western desert, andthe clinical genetic services people were working on this,published this article. and the point that's highlightedthere in the abstract of the paper is that they wereable to identify this mutation. and they thought that it was causal,if it was causal, then it meant they treated the effectedpeople in this family differently. but they couldn't work out whetherit was causal because they didn't know if it was simply something thatwas common not found elsewhere, but common in the western desert,but had no impact.
and unlike diabetes,which is common in inuit, this disorder was onlyrestricted to one family. so if this was commonin the western desert, it was almost certainlynon-pathogenic. so they highlight the path todetermine the was confounded by the lack of genetic referencedata from australian aboriginal is their abstract there andemphasized throughout their paper. so one of the important thingsthat we're trying to do here is to rectify that deficiency,if you like.
this outline has all come aboutas a result of a collection of samples that were obtainedin the last century. from i think 43 collection sites,but people are from more communities than therepresented by this collection site. we keep finding more samples, actually, butthere are approximately 7,000. so we have an obligationto find a way to appropriately manage these samples. the collections are in freezers,and i'll talk about that later.
but as nick also mentioned, thereare field notes, correspondence, information and photographs aboutfamilies and communities which have been as of much interestas the genetic information. not just in communities butcertainly in communities. and but also potentially toresearchers, although they haven't been used for that purpose so far,and they're very well kept records. people kept recordsproperly in those days and they are very detailedin some cases. and they were collected fora variety of health and
medical purposes. this was not an anthropologicalstudy, it was a health and medical study. and it was at a time whenpeople were discovering diseases like sickle cell anemia,cystic fibrosis, tay-sachs, that were genetic andthey were common. but they were only occurred inpeople from particular parts of the world or who ancestry came fromparticular parts of the world. in the case of sickle cell anemia,west africa and cystic fibrosis is
largely european and tay-sachs,of course, only occurs in ashkenazi. so this then spurred an interestin collecting samples and looking for, using the technologyof the day, genetic variation in blood markers and so on thatmight be associated with disease. we have, as mick said,a wonderful sample collection, and i just got throughthese quite quickly. it gives you a sense ofthe context of the collection. this is from the western desert, this is the guy that mick thinks,
is the guy on the rightis the cool guy. and there's a very interestingstory, which keeps getting more interesting about this man, which wemight have time to talk about later, but a very amusing story. we've been trying to find out whohe is and that becomes more and more interesting andamusing as we go along. they, again, in the kimberley onthe shores of the forrest river and in wolverton from monamara innorth queensland, and so on. so this gives the sense that, andlet's just go back to this one
because i think if you look at thisand if you look at the records and if you look at the correspondenceat the time, it's very extensive. this looks like a fairlyrelaxed process. there's no indication that thiswas done in a coercive way, doesn't have that feeling about it. nevertheless, we assume that we knownothing about how this has happened, until we are to speak to people andfind out who were directly involved. there were, of course,no ethics committees in those days, there was no national statement andso on.
but we take the view thatwe're going back to people and telling them about this, andasking them what they wanna do now. we don't, whatever was said before, has no weight as faras we're concerned. just to point out that this is partof a larger collection that we have, which was collected for most of thesame reasons mainly from this part of the world but in all about400,000 samples were collected. and the reasons for this andso on are varied and so on. so, let's see probably one of thelargest collections in the world,
if not the largest of this kind. we will set up as i said toreport on how do we need to manage this collection,this extraordinary collection but if wiithin the processof doing that, we now provide a more generalframework to enable indigenous australians to benefit from genomescience and we'll go through that. we asked people,a group of indigenous people, to essentially tell us what to do. we put ourselves in their hands,mick was part of that group.
it was chaired by professor iananderson at the university of melbourne and we suggested,whatever you tell us, we will do it. if you tell us to throw thislot away, we'll throw it away. if you tell us to give it backto people, we'll do that. if you tell us to put it back inthe freezers for the next 50 years, we'll do that. if you tell us we should use it, we'll do it whichever wayyou tell us to do it. i won't go through thesepeople in detail but
you'll be familiar withmost of them, i'm sure. they may recommendrelations to the and they, we were kind of stunned by howimportant they thought this was. that this was collections was ofimmense cultural, historical and scientific importance. so they were very keen to stressthat this had a potential that went well beyond science. and they wanted us to manage this,and they saw this as if we did thisproperly it would be a watershed in
the history of indigenous researchand bioethics in this country. and a model for people doing thiskind of work around the world. i hesitate to say that because ithink some people around the world are doing these thingsextremely well, so i don't want to suggest otherwise. but that's the committee's view andthey wanted us to establish an indigenous governance boardto oversee this that would ensure that indigenous peoplewere as mick outlined earlier, in charge of the process inits entirety and all levels.
we did that and he's mentionedthe members of that board and that will develop andgrow over time. this is just a photograph fromour first meeting with a few hangers on like me, andi'm on the board, i'm allowed and so, we then set as a departmentwithin the university. it has a research advisory committeeand religious access committee and a comprehensive set ethics. our ethics protocol is beingapproved by the university committee and has been endorsed by some of theregional, the appropriate regional.
every single person on the healthstatistic committees but is currently with west australiancommittee as we speak. so, just to point out, this really was we put a on a holdon all record on this collection until we had proper engagementwith indigenous people, and it just stopped being used, andit even fallen in disrepair. so, it was in freezers, in closets,in the broom closets, and in boxes, and so on, in this way. so, we had a huge effortto pull us together and
to get it into reasonable shape andinto modern storage facilities and so on, which we've done overthe past two or three years. the challenge is here,the governor's issue and we can talk about that in q&a, participantand community engagement. mick's already mentioned we havea wonderful community engagement coordinator. the ethics presents a number ofinteresting challenges and problems. we don't feel that the current wayin which human ethics committees, which is a compliance based modelwith a q&a format where you say you
gonna do this this this,is really appropriate. so, we've really changedthe architecture and put the gardens board in a much morecentral place still answerable to the institutionalethics committee but the governor's board we're witty andtherefore indigenous people will be in charge of determining the way inwhich we conduct things ethically. the consent is a big issue in thiswhole area because this is stuff that i say material that's collectedfrom people that may be used for a whole variety of differentpurposes over a long period of time.
and so, there are models of consentbeing developed called dynamic consent which i won'tgo into detail here but we might elaborate on later wherepeople can continuously engage, you have to maintainthe connection with people. and they can continuously givean indication of the nature of their preferredinvolvement in the process. there are infrastructureissues that are massive, and they're being dealt with oninternational, national and institutional levels, butthese are not insubstantial at all.
they're very,very substantial and expensive. it's important to integratewith other initiatives around the world and around australia, and we spend a lot of time inthose kind of negotiations. data access control, as i said, wehave the access control committee. we want to bring people togetherfrom all of the communities we're working with, to work outexactly how that's gonna work. at this stage, that's not somethingwe're it's not an immediate problem but it's something we wantto start working on now.
education and capacity building. there are, as far as we're aware no indigenousresearchers working in this area. so, what we would like to doin embedding the areas of bioscematics andgenomics and related areas. embedding the researchexcellence within this indigenous governance framework. we can then, that forms the basisthen for education, and training, and capacity buildingfrom a sound basis of research
excellence withinan indigenous control context. and we will no doubt be talkingmore during q&a about legal and ethics issues. there are issues about rights and ownership here which are veryinteresting and complex and then there is a whole series ofpolitical, social historic and cultural issues andwe've made an important point and i should say that i got startedon this project when i got a call from emma kowal who is down atthe university of melbourne.
she is a qualified medicalpractitioner but also has a phd in anthropology and she'sthe deputy director of the center. i worked very closely,collaboratively with emma this entire period and throughthat collaboration we've been very insistent against in termsof my talking to my scientific colleagues that we build infrom the start expertise, research endeavours andknowledge in this areas. so, that we're really againwithin the indigenous government's framework.
being proactive indeveloping appropriate ways of doing things from the very start. so, this is just to illustrate, this came out last weekin the general science. it's an organization,the global alliance for genomics and health and it gives an architectureof which we have to fit in to. now, they said a set ofstandards,up at the top there, there is applicationprogramming interfaces, technical standards,they've got privacy and security and
those things are being built anddeveloped down. and we have researchers andclinicians at the bottom and then, these little wheely things inthe middle there are just sort of groups of research efforts thatare individually controlled and we would be one of thoselittle bits in there. and so, we can through this is a wayof allowing us to engage with all of the other activities goingon around the world but having control at a local level. it is a federated system witha fairly complex access control and
legal structure system around it. so, that is whathappening globally and we're having to figureout how we fit in to this sort of scheme whichit's all brand new. i may skip this, this givesyou a sense of how our access control system works butperhaps we can come back to that in the q&a session cuzit's a bit complicated. our motto really is to help strongcommunity based governance in control combine withinstitutions at global site.
we have an independentexercise committee, first, at that point the government's bodyplays a key role, we have dynamic, which maintains an on goingrelationship with people. and there's a technologicalchallenge there which is particularly the case inremote communities that allows people to engagedynamically over time. and the absolutely key fundamentalthing is direct assessment of the community involvementin the whole process. so we have now i think,very good, solid,
sound community engagement process. and mick has described athis platinum class recently. the response has been fantastic, andwe can talk about how we do that. a key to that is on the right there,azure hermes, who's ourcommunity engagement coordinator. and on the left is neil carter,who's the heritage officer for the kimberley aboriginal law andculture center who we'll be working with carefully, in the kimberley,closely with the kimberly. so we always put ourselvesin the community
hands working throughthe community and elders to the families, andwe take as long as it takes. i think we've been back tothe kimberley about six times now, something like that, andwe haven't asked anyone for consent at this point. so that's the way we go. we take this, and this presentsme with a huge challenge, because the peopleare providing us with funds and the institution i workin wants some results.
and results to themmeans genome sequence. so i'm having to managethe tension all the time, and pushing back against that becausewe're absolutely, fundamentally committed to doing this the rightway, which will take time. now, giving back, mick hasalready mentioned photographs. there's been an extraordinaryresponse in communities to the way we've gone and askedthem how they'd like us to do this. and there's an example recently. a fairly fractious community justcoming together around this process
in a way that neil carter, i showed you a minute ago,has never seen before. so it's been a very,far from being divisive, it's been a process that'squite the opposite, and some of these photographshave been people who've never seen themselves as youngpeople before, photographically. or people that they had never seena photograph of who is important to them. so the progress was ofprofound importance but also,
the records andjust the process itself. so, i just would put this up becauseit sort of illustrates this point. so, there is, i think,a whole range of rights issues here, and a number of dimensions. and of course, fundamentalto this is the inclusion and equity argument about the factthat people need to be involved directly with this kind of researchto gain the benefits from it. and it is happening, it's going to to happen, it's notgonna stop, it's not gonna go away.
but there is also thiseffect of just going back properly to communities anddoing things respectfully. and this is a report fromazure from a recent trip. and the man she talked to, he had a sample taken from himas a child, and he said that the idea of someone keeping thisa secret in canberra was wrong, and that no one has ever consideredthe cultural implications of this. after a meeting,he invited her to go with him so he could explain further about hispast and why he had these feelings.
he said that he became angry todaybecause these samples were taken in a time when so many, so muchhas already been taken from him. he was taken from his family,his country, his culture and now he's learned that hisblood was also taken. he wondered what elsewould be taken from him. he said that he understandswhat we're trying to do, and he liked her honesty, when i hadanswered all of his questions and thought that i explained thingsclearly and sensitively. he thinks that what ncig is doingis important and can be helpful for
each generations and there are high probabilitythat he will give his consent. but he wanted to make surethat i understood how hurtful this was to him and how this stirredsome memories and emotions up for him, which he thoughthe had made peace with. he said that this would be atthe front of every person's mind when we talked to themabout these samples, and indeed, that's the experience we've had. so it's not a simple process,it takes time and
we have to allow people to gothrough the emotional process associated with what hashappened historically, so that they can now become properlyengaged now and into the future. so to summarize, we think thatthere is a potential here for reciprocal transformationthrough engagement, so we hope that this isa transformative experience for the communities and the peoplein them that we work with. so the nih,i promised i'd mention earlier, was to a whole new wayof doing research.
we think that we are doing thatin this project, and in fact, leading the world in doing that. and so we hope that others mightlearn from this engagement, and maybe indigenous communitiescan show how right way research is a good thing for everyone. and i just wanna show personallywhat this means to me, because i have worked inlaboratories all my life. to me, that's a sample,you go to freezer or the fridge, you pull it out.
you do some analysis on it, youget some data, you write it up and publish a paper and you move on. and that's really how i alwaysseen the contents of freezers. but i've come to realizethrough this process, and it's emphasized particularly bysome people who see these samples as extensions of people, orrepresentations of people. and i've talked about how they maybe stored, and who they should be stored appropriatelynext to in the freezers. and they want tocome to canberra and
to help us to figureout how to do that. so there's a spiritual connection,a deep connection between people and this material that i hadnever really understood or considered before. and that has really transformed theway i think about the research i do. not just in relation to indigenouspeople, but more generally. and i think that's an example ofsomething that this project can do. and so i would like to,having said that, with a photograph of the materialfrom the freezers, say that i would
like to pay my respects to thoseindigenous australians who donated the blood samples that were thefoundation of our collection, and to their descendants,both present and future. and with that,i'm gonna show you a movie, which somebody elseis gonna organize. so we have a, this is a movie that we use as partof the community engagement process. and i'm hoping the sound works. [music]
>> imagine your veinsare like rivers and your blood is like their waters,with lots of stories to tell. they actually let us knowwhere we come from and explain to us why we get sick. these stories are already inthe blood, in our bodies, in a written language that doctorsand scientists can understand. these stories are called dna, and our stories come from bothour mothers and fathers. they got the dna storiesfrom their mothers and
fathers, who got it fromtheir mothers and fathers. because this has been going on forthousands of years, dna stories can tell the storyof a very, very big family. people share some of their storieswith other people from the same area, even if they are notfrom the same family or clan. so when we look intothe story of the dna for a person, we also see a littlepart of the dna story of their ancestors fromthousands of years ago. understanding the dna stories canhelp scientists to understand more
about why some families and communities have lots of peoplewith diseases like diabetes and kidney problems, andother families have only a few. it could also help us understand whymedicines work well for some people, but for other people they don'twork or can even make them sick. a long time ago,small bits of blood called samples were taken from aboriginal peoplein communities all over australia. right now, the samples are being kept at theaustralian national university in
canberra. a mob called the national centre forindigenous genomics, ncig, are looking after them. this mob have a board withmostly aboriginal people. they know it's important for us toknow about our blood and our story. they're not really sure how muchthose old people knew about giving their blood samples, sothey think that their families should be able todecide now what to do with them. if you and you're family decidethat the sample should stay
in the collection, the ncig mobwould get the dna story out of the sample and read the storyof the blood onto computers. the dna stories from eachsample will be put together with the stories from all aroundaustralia to make library. the stories in this librarycomputer will have no names, only the dna story and the communitywhere the sample came from. sometimes researchers, like doctors,who are looking to find out more about diseases, might ask tolook at some of the dna stories. they will have to askthe ncig mob first.
if the ncig mob think that theirproject could help aboriginal people, they will let them readtheir story only for that project. the ncig mob are being very carefulto make sure that aboriginal people are in charge of decisionsabout who can read the stories, and what they can read them for. you'll be able to see whatthe sample is being used for on an app on your mobile phone orcomputer, so you can say no anytime youwant to using that app. this is a very new thing foreveryone,
but the ncig model to makesure that the dna stories can be used to help aboriginalfamily and all aboriginal people. keeping these stories might be veryimportant for all aboriginal people. what do you not think about that? how do we stop it? for people who want to know,it was charlie king, he's a broadcaster,an aboriginal guide broadcaster from darwinwho narrated it. so, we're pretty proud of it.
we think it explains dna,you know, in a really easy way, so. put some of the things we'regoing through now, and what simon had mentioned aboutthe inuit people from greenland, one of the worst things we'vefound this in my last job, if people weren't compliant withtheir medication, they basically got written off, so if you don'tlook after yourself on dialysis there's no way you would ever bea candidate for a kidney transplant. doesn't matter whatthe medicine does, it genuinely not come improved.
so, there was always images buildingup with this people who just don't care about themselves,or watch we care. but the effect was the geneticmake up did not allow to happen. so there's all these thingsthat sort of impact on the way the medical profession,the clinicians, treat people. when we see sometimes they've gotno control over how it happens. so that's where weare at the moment. we will be writing a part of this story in the social justice nativetitle report this year and putting,
in particular human rights,i want it honored starting from free prior informed consent,and how we go through that with what simon mentioned,the dynamic consent process. so if people can pullout any time they like, we haven't developed the app yet. the same as we haven'tdeveloped the content forms. so we're getting there now. so i'm gonna now if nothing else,we might just open up for questions. might join us up here.
>> do you wanna sitdown out there or? well, i might stand here [inaudible]>> [inaudible] >> thanks. >> thank you very much for the very useful information yougave us, and i'm sure most of us are quite unaware ofthis side of genomics. but my question is how is it related to the? >> like i said before,the first thing is consent.
it goes way back topeople getting treatment, hospitals, orbeing part of a research project. you gotta give consent. so our job is really making sure,and that's a human right to participating decisions that affectyou to give free uninformed consent. so, first of all, we'll startfrom that perspective, but the other thing starts,we're just discovering this as well. how people actually usethe research that's coming up, there is, because you hear thestories about how many aboriginal
people are addicted to alcohol,there is somewhere topologists think there is gin that mike's addictedto it, and they sort of ignored the fact there's more aboriginalthan the general population. the human rights aspect of it, as weget through to this like i said, and it's gonna affect all ofus in one way or another. what about things likeproduct disclosure if you've got your genome map? you've got a marker thatbe some form of cancer. would you be able to get insurance?
we're just discovering someof this at the moment. >> [inaudible] aboriginal people [inaudible] i have noticed that they are mixed breed. >> i have to call you up there, because we don't actuallygo into that either, all aboriginally or not. it's a binary decision,you've got to make here. and there's no way,if someone wanted to come in and
determine degrees of aboriginally,which you can't do, and someone wanted to discoverthat there's no way that would ever make it through either theethics committee or the national, the governments board orthe center, so, sorry. that's a big part of our world andaboriginal affairs in australia. >> so perhaps to clarify that, the honor of ancestryis only a component. [inaudible] andthat this conventional being done through records, both marriage anddeath records, etiologies.
this simply provides an extensionof that process, but doesn't provide in any wayotherwise impact on your identity. possibly, basically. from the genetic point of view, there may be good examples offamilies with huntington's disease, for example, being treated invicious communities, the gene that causes that isthere as a consequence of european ancestry. but it's being managed andtreated within this context.
the people who have the disease identify themselves andlive in individual society. >> and can i thank you both? i think that was an absolutelyfascinating presentation from somebody who really doesn'tknow very much about this. and the potential seems obvious,even to a nonmedical surgeon. i may have missed this point soexcuse me if i have, but the people whose blood samplesare currently being held. how will you contact eitherthat person or their families
to get consent to continue to usethose samples for future research? well the, can you give me that, thisone, i'm not sure if it's working. but yeah,it varies from place to place, but in all cases we have been so far, perhaps the most recent workwe've been doing is in the kimberly. we work with the aboriginal medical service counsel, and with thekimberly law and cultural center, so we're with the regionalcultural organizations with community elders,and show our managers and
pbcs or whatever the legalstructures that are relevant. and then approach families with everybody knowing what we'redoing and explaining to them. we go back to every singlefamily that is involved. and if the person has passed away, then we ask the family if there'ssomeone who can speak for them. if there isn't, we don't. >> it's even got, at the beginning,gillian, we went to the kimberly law and culture center, which is thispeak body, and they actually started
advising us who should even getaccess to the lists of names. so we've tried to do itprobably all the way through. who should even see the listof names of people? so, it's a very firm decisionof the governance board. until people give their consent,or descendents give their consent. that they'll stay inthe closed collection and won't move into the open collection. so, and we've got to maintain that, if we actually do one person outof the 6,000 and we blow all of
the credibility that we've built upover the last two or three years. so it's fairly expensive. but to give an example, when wewent to colac in the first trip, there's people in copenhagen with,i don't know, 10,000 hair samples. >> not that many. >> not that many, but there'sanother group in australia with a whole lot down in south australia. and the kimberly mob told us,we don't want the mob. we don't want the people tocome back here from copenhagen.
they're not welcome here anymore. i said why, and they said, well, they told us wedon't come from here. and i said, andit's this way you present stuff, classic way to present things. they said, we don't come from here. we're africans,they told us we were africans. so what they tried to explain was,everyone come out of africa and instead, i missedthe 70,000 year bit, but
they could have foundanother way to say, well, we've actually got proofyou've been here 70,000 years. we've got scientific proof. but they didn't. now, that affects us because there's a group in south australiathat engages with those copenhagen researchers who want tojoin with the center. we're saying, well, now hang on,you've got to go and fix that problem up beforeyou can join with us because
our reputation so far is fairly new, and there's no way we're evergonna put that reputation at risk. because they've told us fairlyclearly they don't want to work with those copenhagen researchers. so it's a bit fraught as anyone,i keep on finding out. if you think of university politicsand it's probably the worst form of politics i've come acrossin a while, but this happens. so we've said very clearly tothe australian group, you've got to sort your relationship outbefore you come and work with us.
>> so, i could add to that. there is anotherapproach which is used, which is simply todetach the sample, the blood sample or the dna fromthe person and make it anonymous. and we've absolutely decided not todo that for a variety of reasons, but not least of which,you just lose so much by doing that. by retaining that connection,there are all of the engagement aspects of it, but also fromthe medical research point of view, you lose a huge amountfrom doing that.
so that's something we've decidedthat we're not going to do. >> okay, [inaudible] cuz i thinkpeople might be [inaudible]. >> thanks->> [inaudible] by the way, but. >> thanks for that fascinating andchallenging presentation. and the project soundsindeed important. i'm interested in some ofthe cultural and historical issues. and one, if you can tell usa little bit about how you're proceeding with repatriation andreturn, from what sounds likea huge amount of records.
>> well, at this stage we'renot [cough] excuse me, we haven't returned anything. we're talking to people about howthey would like us to do that. that's an evasive answer,but it's the truth. we want to do things the waypeople would like us to do them. >> yeah, for example, malngin, the community movedabout 30 years ago. there's actually a map ofwhere people lived in the old malngin community.
which is really, really important. but the new, and if you knowanything about aboriginal art, they're the custodiansof the wandjinas. so they've got this greatinfrastructure beyond the malngin and this,both the written records and the photographs, can just plug into,for the malngin people. but there's not many people withthat sort of infrastructure beyond, so probably the first protocolwill be the malngin people. because they'll be engagedright from day one on this, and
has been really positive. but it was simply because we hada record, first thing that got them, we had a record of the, and a mapof the whole malngin community. so, and people like randy spargo andkaren o'day, who were up there,they're fairly well remembered. they're remembered really fondlyup there, those two doctors. so i think randy stilldoes work up there. so a whole lot of this is buildingtrust, and we don't want to certainly release it to people whodon't have the authority to hold it.
so matter of fact, the woorabindasamples, i'm not allowed to even look at the records of, because myfamily comes from woorabinda, so simon keeps me away from that. so we're trying to do it right. even through, even members ofthe governance board aren't allowed to look at stuff that theyshouldn't be looking at. >> it sounded to me, too,and thank you very much, as we all found it reallyinteresting, both of your talks. it sounded as if you are alsotrying to develop a consent model
in consultation,which is very impressive, and i'm sure very complex. and i was wondering what you'redoing with that issue of dynamic consent, since commissionergooda referred to the fact that genetic information can becontinued in perpetuity and also that it hasunimagined future uses. what you do aboutconsent to those uses? is this idea of dynamicconsent going to continue on into the future with descendants,for example?
>> sothat's a really good question, and i could put that diagram up that ididn't show you, but we probably might be here half the afternoonworking our way through it. so at this stage,we will ask people to consent to either to make theirsample available for sequencing within the collection. people can give a freshsample if they want to. the people who've already gota collection sample because it's, from our point of view, it's mucheasier to work with fresh material
or people, we've had a lot ofpeople interested in joining that. so what they're consenting tois being part of the collection. that will only be,where all we'll do is the kind of work that we need to do inorder to build the collection. the access to it from thatside will be controlled by the indigenous access committee,and we're gonna bring the various people togetherto work out exactly how that works. and then, the dynamic consent isthat you, that in both of those contexts, somebody can see exactlywhat their material has been used
for, all of the projectsthat have been involved in. and have notification beforehandthat they can say no, i don't want to be partof that particular one. there is the reporting back issueas well, that's a part of that. the issue aboutthe future generations, i can't remember the wording onthe information sheet exactly. but there is, i can't remember exactly howwe dealt with, which i think simply means that we will again,what we have is provisional and
we will discuss this withpeople about how to do that. but that's an issue that goesbeyond indigenous genomics. these databases get set up andthey relate to family members. it's not like when you die,your stuff disappears. it has implications for your family. >> i guess that it's that extralevel of history of exploitation [inaudible]. >> yes, yes. >> and that's what we'revery careful of doing.
that's what i said in the beginning, it's sort of now growninto two projects. one is about consent and the ethicalframework and how that works, plus the scientific side of it. can i just say, when we we're at thecherbourg, we met a lot of people who'd actually given their samples,[inaudible] school kids. and they raise issues simon raised,and because it was cherbourg near brisbane, lots of them say, everyonewas always up here taking blood and we're spitting in cups andall that stuff.
but no one ever came back andtold us that this particular, we've got some,it's a really good story. the queensland sampleswere different to most of the other samplesin that it was a project done by the queensland instituteof medical research. because kids on the aboriginalcommunities were just failing to thrive. and the infantmortality rate was just horrendous compared to the generalinfant mortality rate.
and the researchers originally said,these kids are okay, and they underestimated theirage by about two or three years. that's how, they're good forfour-year-olds but they're actually seven years old. so these kids were, and it wastabled in the queensland parliament and it was one of the first uses ofthe power after the 1967 referendum where the commonwealthintervened in the state matters. so, we're getting a lady whohad done her phd on this, and found the stuff outto write about that,
because it's actually a really goodstory, because they were just rapt, saying aw, jeez,we didn't even know this. but suddenly you're pretty importanthistorically because it's probably the first time the commonwealthused its power under 5126. after the 67 to, and that theystarted an aboriginal health program in queensland because the situationof the kids was so dire. so that's a part of that history and i think it's really important,not only getting consent, but, like simon said,keep on going back to people.
and i've gotta say,i've never seen it before, the number of peopleputting their hands up. cuz 6,000, you've got to takea bit of a strategic approach. like we said, the kimberley, topend, and queensland then any other community want to talk to us, we'llgo out, more and more communities putting their hands up and saying,we want to talk to you about this. so it's pretty good. and even, i mentioned those twocontainers of remains, we think we might be, if agree, we can actuallyanalyze the dna out of those,
and we can place them, provincethem back to where the communities, and they can actually go and reburythose remains, which is a great ceremony if ever you getan opportunity to go out and see. it's bringing peopleback from overseas. but even on that, we'll say,the material belongs to and they'll control whatthey do with it. so just trying to make surewe don't cut any corners. and i think, i've written aboutthe amount of time and effort and resources we're putting in atthe front end of this process will
certainly benefit at the back endwhen we get to that use stage, i reckon. so we're gonna takeone more question. >> it's been answered,actually, already. [inaudible]>> well, can i thank everyone for coming. it's a project that i'mexcited about to be involved. i'll finish shortly andhand it over to someone else. but it's been reallyexciting to get this done.
and like i said, in a couplepresentations' time, simon will put my genome up there, and thenwe'll find out where i come from. so i'm waiting with batedbreath to find out, is there any blue there, oris it too much orange or whatever? so i'm waiting to seehow that pans out. but can i thank simon forcoming along? >> [applause]>> and thank you guys for coming along and showing interest. but just be aware that we'll bewriting about this in this year's
social justice andnative title report. so you've got a bit of a heads upon what we'll be writing about. so thank you again. >> thank you, mick [inaudible]. >> [applause]