 The panel that that I've been asked to moderate today is looking back looking forward So we'll be looking back and then looking forward and what the format is Is based on a discussion model a conversation? So I would like you to consider each and every one of you's as People as part of that conversation. So you will not have these formal presentations but please Know that before I introduce them There'll be two rounds the first round sounds like a debating club the first round will be some general statements introducing themselves and And then getting into the second round. I've asked my panelists to Consider three questions of which will be putting on the big screens for you at that time. So once again consider yourselves as part of this discussion and Feel free to put up your hand and then offer comments questions And let's enhance this this conversation that we're going to have So this will be about till noon. So sit back and and hold on to your seats So in in that regard, I'd like to introduce our panelists for today Our first panelist is is going to be miss Jean-Vierve du Bois-Flein Jean-Vierve has a degree in law and has received her PhD in philosophy From the Valley University in Quebec. She is currently the CIHR the Canadian Institute of Health Research Advisor on indigenous research ethics. She was closely involved in its development and promotion evaluation and implementation of The guidelines for health research involving Aboriginal peoples She was also a member of the University Ottawa Research Ethics Board for Health and Health Sciences Vice chair of HealthBridge Research Ethics Board, but as well as you know already an organizing member of Cureb Then we'll have mr. Gilbert White duck. I was elected chief of his community For many years, but he holds a bachelor of social work Bachelor of education and master's in education and honorary honorary doctorate From the University of Ottawa in 1999 and so he brings over 33 years experience at the community level and He's presidentally the counselor in a First Nations treatment center but He's also a friend of the Institute and I look forward to hearing him again this year Mr. Tony Belcourt his career spans 45 years of experience and has significant achievements in Aboriginal affairs Corporate governance government and not-for-profit sectors Instrumental mr. Belcourt has been in in helping to found lead and serve various boards regionally nationally and internationally at in various Aboriginal organizations He's also a Métis Nation ambassador for international issues. He's worked on Meetings that work towards indigenous self self-determination, but as well in the United Nations organization of American States Helping to craft language on the United Nations declaration on the rights of indigenous peoples He's served on many boards and advisory committees He's currently the director of Canadians director of Canadians for a new partnership in 2006 he has served a national Aboriginal he received a national Aboriginal achievement award for public service and He's also received an honorary doctorate of law in law from Lakehead University in 2010. Mr. Belcourt in 2013 was appointed an officer of the Order of Canada Scott Nichols Been working with Inui Taparit Kanatami for quite a number of years Him and I were colleagues when I worked there as well, and I'm very pleased to see him here he was he's the director as the director of the Department of Environment and then Years on he became ITK's senior science advisor responsible for advising the executive and staff on research and science related issues and in 2010 Expanded his science advising role to become the director of Inui Kawisa Vignette the research center at ITK Scott holds a PhD from the Department of Geography at McGill he's authored several peer-reviewed articles given numerous presentations and He's a great friend of Inuit and very glad to see him here today We thought it was important to be grounded in some of the historical and contemporary issues across this country and because of the program this week you'll get into very potentially specific areas But I alluded to one word a few minutes ago self-determination Because it has some some critical aspects we think of research in communities as potentially separate from other Issues, but I think you'll see an important tie-in between self self-determination Communities reciprocity relationships that'll add more food for thought. I want to give Jean-Vierve the first round First few minutes. So Jean-Vierve without further ado. I would like to start acknowledging the unseated and unsurrended Algonquin territory So I'm here to represent the CHR community The Canadian Institute of Health Research is a major funder public funder of health research in Canada and its mandate is the creation of knowledge So it funds research in a number of ways. It has very specific programs You can talk about that later if you're interested and the other part of its mandate is the translation of that knowledge into improved health with other two aspects and Seattle also has an ethics mandate Which is actually quite unique for a funding agency to have it entrenched in its legislation and what does it mean? It means that actually Seattle funds research to explore discussion the vertical issues that need attention and Seattle looking back Was created actually in the year 2000 So some of you may know that it came after the medical research council But it's there before and that actually had much narrow mandate as its title indicate Much more focused on medical rather than health that CHR's vision tried to encompass and why CHR Model is so interesting is that it's actually the results of a bolder vision To create an organization with 13 virtual institutes Each of these institutes led by an expert in his or her field in science from BC to Newfoundland so these scientific directors are all around based on their area of expertise and And see how to has an institute on Aboriginal people's health and The mandate of the Institute of Aboriginal people's health is to of course fund research to try to improve Health outcomes of Aboriginal communities So this is the focus on population There are also other institutes that focus on specific populations like the Institute of Human Development Child and Youth Health the Institute of Aging, but what we are interested in is the Institute of Aboriginal people's health and The Institute has been playing a very important role regarding the way Research is Framed regarding ethics Because its leader scientific lead Jeff Reading played a very important role I actually remember a plea That Jeff Reading the scientific director the original scientific director CHR made to his 12 counterparts I said there are 13 scientific directors a plea that he made to the other scientific directors and do the CHR president and saying So I have a funding envelope How am I supposed to find research for my people my communities If I don't have an ethics framework if I don't make sure and sure that the research conducted with my people is ethical So he was saying I am in an untenable position How do I do that so I'll I'll continue afterwards because we take one question at a time correct. We'll have six rounds. I want to make sure so I'll tell you What he speed was about and what he resulted in I'm here with a lot of sadness over the weekend a young initially now be man 18 years old was tragically died a lot of speculation but It's one of those things that continue to unfortunately occur in our communities and What is always so interesting is that tons of research has been done Loads of recommendations have been made And as I now tell people all I'm seeing and I can only speak for myself from my experience All I'm seeing is that either people saying how sad they are That they're unable to do anything and I see a lot of people hugging each other, which is all nice hugs are fine But no clear action. They're gonna come and help Our young people in particular all of our people, but our young people Who are in every community? No, no community is spared. No community in Canada spared unfortunately And I could go on into many pieces of that was suffice it to say that the disconnect from land the disconnect from language the disconnect from identity has played such an Impact and as colonialism and all that it's done and But what do we do about it? But I'll leave it at that I've had the opportunity in my community to have worked over three decades in education and then was elected as chief in a community and and I've played a number of roles and now I'm working in a treatment center a residential treatment center and I Will be taking on the role of a clinical supervisor in the coming months and and I have to acknowledge really Carlton University and the Bachelor of Social Work degree that I got from here that Allowed me to really pull together that those pieces that allow me to do the work that I'm doing So that's a real positive But when I when I look having been in the community all of my life in all of the different positions I've grown so skeptical about research About people who come in and I can look back when I do research I look back to the 20s when the anthropologists came into our community and Literally lie to the people they they they mind our culture. They came there was mining going on They were digging all over to appropriate themselves of who we were our identity and Then to come and to interpret it within the museums within research papers or even worse they acquire their PhDs at the University and and then become our voices and Then become our voices We have a voice We're capable of speaking and articulating those things. It's not to say that we're not seeking for allies we need allies as We say when the war of 1812 when the British were looking for allies we allied ourselves along with the British We now need Canadians to ally themselves with us Not to do it for us, but to do it along with us So I've had many difficult situations of individuals again university types Let alone government people coming in and Gathering information not respecting protocol in a community not respecting adult adults and not respecting elders Assuming that what they had learned maybe in university was the thing to do So it was no longer a natural protocol and Because of time frame because of time frame I've got to do it here I got to have this paper in you know my my contractor is asking me to have these deliverables Forget the reality of what goes on in the community and therefore for me a very fundamental concept of ethics And that is respect and Respect means you learn first and foremost. Don't be in a hurry learn first and foremost What are those protocols out and give yourself time when you're doing it? And for me any research in regards to indigenous people needs to have Practical application for indigenous people. It's got to have a meaning for us otherwise, what the heck does it mean and That's been I think the challenge we continue to have Although there's a little bit of like the stars in the sky We we see some sparkles here here and there where people are attempting to do that But I don't believe that in 2016 things have gone far enough I'm always very disappointed when I speak to other first nations and should not be first nations up north Who are sometimes less the equipped to deal with people that are coming into the communities whether it's research about territory? Environment whether it's research about social issues in the community You know and again, we'll talk about it later But an example of somebody coming in and saying well, we have this beautiful project. We got five hundred thousand dollars We got a year to do it Are you okay with it? We figured it out. You're gonna fit in we'll hire one of your people to go door to door Sign here sign your consent You know and if you don't oh my gosh, you're gonna lose it and lose all this valuable data unacceptable unacceptable so the whole thinking about how the relationship between researchers and indigenous people Yes, we did. I mean there has to be a framework But the framework cannot be developed outside the community It's got to be developed with the community that protocols have to be understood with the community and there has to be Respect that guides everything and we need to even define. What does respect mean? Does respect mean that you're just going to inform me or does respect mean you fully involve me in all aspects of what's gonna go on? So I'm sure we'll have the opportunity and look forward to to questions and the exchange because I think that's where the rich the rich and slice so the question in 1985 I was gifted with the name weekly Gosh my mind somebody was saying he was born in the I was in the 40s Wolf walker by by an elder Rufus good striker My home community is Manitouk Saihin Which in our language means Spirit Lake? Been called Laxing Dan it was there was a vision of St. Anne on the lake in 1850 By a priest and he called it that and set up a mission and the mission grounds In all other territory around that is where our community comes from I Came to Ottawa in 1971 I would prior to that vice president of the Métis Association of Alberta And Métis leaders in the West decided that we had no chance of addressing or getting any Anybody to pay attention to our our claims Land claims the fact that our lands had been taken away with the indigenous peoples in North America They're completely landless except for some lands set aside by the government of Alberta in Alberta So we set up that organization and I Was named the president of that organization called Native Council of Canada and we got together with non-status Indians at the time because we both wanted to have a national voice first of all for recognition and To be able to address our issues In those days Indian women would lose their status if they married anybody who was not an Indian under Registered under the Indian Act could have been An Indian person or a First Nations person, but if they weren't on the Indian registry they would lose their status And so did their children and so on so we got together and came to Ottawa And I already knew and it had experienced Racism which is learned behavior based on a lot of Attitudes that are developed by people over time and a lot of misconceptions sometimes fears When I've came to Ottawa it certainly Magnified for me How much little or how little people knew about the meeting and The kind of confusion that exists about the meeting and Unfortunately that is perpetuated today We are constantly being defined by others in different ways One of the things I wanted to point out is that I had not heard about Ethics and research Indigenous peoples until I was invited to the Participate in this panel and I didn't quite understand why I was being asked in the first place Since I'm not a researcher I care my last stint in Active politics was as president of the Métis Nation of Ontario for 15 years from 93 to 2008 and in between that time I was involved with the Métis National Council and and so on so I Participated in research we've done our own And so on and we've had other people do research and come to see us never heard about this the Ethics and research Standards that had been established And then I never heard about chapter 9 and when in this prep meeting I thank those very much for that Catherine for that preparatory meeting because it really helped me to understand a number of things about first of all What was going on in this whole world of ethics and research and I learned about chapter 9? so it was chapter 9 because John Kelly was talking about chapter 9 and So he was kind enough to send me the link to chapter 9 and I discovered it. I've got some issues here with chapter 9 which I think go to the root of why There's so many misconceptions about the Métis people When you start off with a definition that says Aboriginal peoples Includes persons of Indian inuit or Métis Descent regardless of where they reside and whether or not their names appear on an official register well The word peoples is a very significant word in international law That's why the Declaration is called The United Nations Declaration on the Rights of Indigenous Peoples Peoples are a people They aren't individuals Individuals are members of peoples First Nations peoples the Inuit people the Inuit are people so are the Métis so when we This this is something that I think is really a Fundamental issue that needs to be looked at a lot of people claim Indian ancestry And say I'm Métis Well, that's fine. There's another part of this definition that I I think needs to be augmented as well as called Self-identification is a fundamental criterion for defining Indigenous Peoples Yes, but so too is community acceptance The two go hand-in-hand So in the Métis nation for example we have a Métis Nation registry That's an interim policy an interim registry because we haven't had the funds to implement the community acceptance process so we Ourselves within the Métis Nation are Still evolving and developing our own registries But something is very clear and nobody can say I am Métis person from the community of Laksa in town and Well, they can say that if they want But if they aren't accepted by that community because nobody knows them Ever ever heard of them and so on then how can they be considered to be part of that community? Now I do acknowledge and understand very well and I've experienced this as Growing up that a lot of people have been disconnected from their communities because they've been opted out or Moved away for all kinds of various reasons and so a generation or two later some people come back and they say listen I'm proud of my heritage. I'm proud of my ancestors who are from this community. Well, it's up to the community to say yeah Okay You are part of this community and be able to participate in all of the things that the community will enjoy whether it be rights or special programs or services That that the community them has has developed so community acceptance is is a critical aspect of defining The people and the community That's another issue. What is the community? So there yes, there are communities of people with vested interest These are associations For various reasons someone mentioned friendship centers. They have an incredibly important role to play Various other kinds of organizations that come along But in terms of dealing with a people there can only be The people who have come together as a collective who share common history tradition culture language territory and have formed their own Representative organizations or governments or governance structures So the right of self-determination means that we can We we define who we are. Yes, that's true But there must also be community acceptance and I want to point these Two things out in terms of this. I have other things to say about this by the way But I know I'm just starting to get into it and I don't have much time now anyway But I do intend to actually follow up because these things concern me because they do lead to Further misconceptions and misunderstandings About who the Métis people are that's all I I'm gonna talk about who the Métis people are Hi, I'm Scott Nichols. I'm I'm really honored to be with such a distinguished panel and to be asked to To speak with you today I'll recognize being on unceded Algonquin Territory and had the great fortune to work with the Algonquins the barrier Lake just north the Kitagans he be there for many years many years ago and But today I'll speak to you On behalf of my president Nathan O bed Who's president of inuit to pitted cannot to me of the national organization that represent the unit of Canada and he He's asked me to come because I had some involvement in reviewing the tri-council policy statement number two Back in the in the day And have continued on on working on research issues since then Natan is elected By the presidents of the four land claim organizations that Span across the Canadian Arctic from the east New Nazi of it Southern Quebec Nunavik Nunavut and to the furthest west the new Vialuit and the presidents of those land claim organizations are elected by their population within within their region and in this way inuit have a Canadian inuit democracy and with constitutionally protected rights and Agreements with the crown in terms of How one deals with the environment to wildlife And and and and those sorts of things and and Given given that Relationship and and talking here. We're talking about the past and looking to the future in the Arctic in in the past there was a number of Visitors and and some of the inuit history is very similar to other indigenous peoples throughout Canada You know originally we Inuit had the whalers that were that came up to Harvest whales and send the oil back to Europe You all know about the Hudson's Bay Company and and and for the fur industry Certainly the missionaries came to spread the word of God After the Second World War we inuit had the Governments move in and establishment of the distant early warning sites the due lines that were spread across the the north that you know established some military installations and and The Mounted Police that came up anyway the whole a whole myriad of of individuals that came up and institutions that came up to You know to to make a living to Get something for themselves from from the Arctic and I think it's you lack Identified early in his his talk that research has been one of the the most recent I suppose that You know over the last number of years it's been very evident that research has also been part of the colonialist enterprise and The The equality in research has not always been there and and we have still a ways to go I Think we have The Tri-Council Policy Statement we have the CIHR originally which which actually had an aboriginal Section before the the new Tri-Council policy state policy statement chapter 9 We have the UN rights of indigenous peoples We have institutions in the Arctic that require Research license agreements to be signed and approved before research is conducted What else do we have we have Well, we have the the truth and reconciliation the 90 fault for calls for action which also Provides some some guidance and in moving forward And we have an improving Inuit to crown relationship with this with this the new current federal federal government so on paper It would appear that anyway have some pretty good tools to be Dealing with research and research ethics and and with the general populace and and and and moving forward how things should be conducted in the Arctic But I think Inuit have found that there's still this very unequal relationship and Inuit are moving forward very much interested in in moving forward the yardsticks on Self-determination in research and of course research ethics are such an important part of that self-determination in in in research and I Think I'll just leave it there as setting the scene and have more to say about More of the present situation and then where we might go in the future, but just thought I would Bring that forward as a Introduction introduction. Thank you so much. I've asked I've asked the panelists to consider several questions Because I think it's an opportunity to set some once again some deeper context because the subject matter that you'll be exploring this week will be an eventual you know draft Submission to a to a model of research ethics board, but you know context is really important You're getting a sense of kind of the the unique historical perspectives of each of these These folks whose communities they've been working with for quite a long time And I think you're starting to get a sense of what what some of those issues are around in particular Working with communities that that have their own needs and priorities and because of that I've asked them to consider and I will ask you now to consider these questions and I think they're very relevant because you'll be getting into The Royal Commission on Aboriginal Peoples you'll be hearing a wonderful lecture this week you'll you've heard that the The declaration of the rights of indigenous peoples So there are these documents and tools that we work with that help you You know navigate as you move forward, but I think the bigger context around it And the word that often isn't used in research is people's right to self-determination So I thought it'd be important to kind of add some of that context so I Would ask the participants and I would ask yourselves to consider these questions and Inter and just offer your own Perhaps questions to the panel or within with each other But I wanted to use these as a guide And feel free to interject or add So I wanted to ask the participants the first question is You know Regarding the past what why did your community and community could be? The organization or the community that that you've been working with so why did your community become concerned about research? Yeah, I don't know how much you know about the past history and past abuses But I think of course it needs to be said we can't continue the discussion without referring to these cases and I'll Only be mentioning to a couple of a couple of them So there is the new channel case the the tribes in British Columbia. This is Canada. This is not the US or some place so this is Canada and the Community and and I want to apologize first of all to panel members if I use terms that make you you know Please tell me afterwards, but I so I apologize in advance because I realize I probably You will you will hear a few of those but I'm trying my best, okay, so the new channel case is the tribe that was in BC and They they they had a Many problems with arthritis rheumatoid arthritis and the tribes and the people were very much affected by that condition health condition and I I Don't know how it happened that anybody either a researcher was aware or anyway, so a researcher came into their communities and Offered to do research with them on them and Yeah, he He said that maybe he would be able to find a cure Based on you know the research that he'd be doing with them and for instance withdrawing blood samples from them And then try to find something of course the community was extremely enthusiastic at the idea of having research Conducted and maybe yeah, why not hope of the hope of finding a cure for their communities that were in such That was suffering so much from that condition So Richard Ward came and took many blood samples from these communities as per their consent So the idea of course that he would be focusing on the issue of arthritis rheumatoid arthritis Well as it turns out he that researcher and his team had a number of other interests as well one of them was genetics anthropology so He never mentioned anything of course to the communities and Through the years actually he got to use these blood samples for purposes other than the What he had obtained consent from them and not only did he use them in Canada? But he used them in the US even in Oxford in England. So these blood samples have been traveling Extensively of course without the communities Knowing about this and whether the researcher actually found anything that could help these communities Actually, he was a he was in the end. He had to admit that actually he was not able to find any Particular results that would actually have to alleviate this the conditions these communities So this is an example and the and the Nutanult were extremely Disappointed this is a very minor term when they heard about what had been going on with their blood samples and and the Meaning that thank you of course again better situated than I am to explain this that blood samples are not just a component of the body, but they are part of the whole person and Actually It's it's in a way. It's it's there's a good ending because the blood samples were returned to the community many years later and The community was able to Give the attention the respect to these component biological samples Human parts in the way that it deserved and Actually, the the researcher passed away and anyway, so That's very unfortunate There is another There was another case in in the US that time of Havasupai tribes where something quite similar had taken place But these are just one of many many examples and actually at the Canadian Association of Research Ethics boards that I attended in 2013 a Researcher brought up something that hadn't been really circulating in ethics research discussions until then and It had to do with yes first nation Métient inuit people and it had to do with the Experiments that took place in residential schools and what is now known as the Residential schools nutrition experiments. We know that many things went on. Well, also that went on within these schools and Stating the plain facts. Yeah Aboriginal students People's Were being used children were being used to study For instance tooth decay and Whether they these children were in pain or not in pain They were used and actually and Researchers wanted to see how far, you know, the tooth decay could could go Without treating the children who they knew were in a lot of pain So that's another another case that came up that was put to light. Fortunately recently, but again, I Mean, yeah, it's gives it leaves us a speechless to us white people and And and we know that this went as well on with prisoners in the US and black people and so Yeah, so so why Jeff Redding wanted to make sure that there were proper safeguards in place regarding ethics I mean he maybe didn't know about the nutrition experiments But I mean he knew about all number of other cases he had heard from Jobeki from his communities as well So that's why he um, he wanted to make sure that there would be guidelines That's the least he could he could do was to ensure that guidelines would be in place I'll stop here I'm very proud of the community that I live in and I'm not only speaking about what's called the Indian Reserve But on the fact that we're we're on the territory as was mentioned this morning. How important that is that connection But our community has always been really concerned about research When I did a bit of my own research internally to see what had been happening since the formation of our reserve the government at the time on August 9th 1853 Pre-confederation reserve is what we are people were concerned, but we're not in the position of power To do anything and we could see that a lot of data was being collected that was going to be used or attempted to be used against us To try to demonstrate that the assimilation process was working But I just want to share with you three or four situations of the past that I mean Really leaves much more than a sour taste in our mouth But it's we become so skeptical and it's hard to break free and to find trust in people beyond that And I spoke earlier about the anthropologists who had come in the 20s to gather information about our territory our our Ceremonies our cultural objects and whatnot and went on to interpret them in writing and those have been used by Government departments in those early years But I also recall in our community and I don't have the exact date But maybe in the late 80s early 90s where the University of Montreal came in and They had come in to to do research in regards to what they call diabetes So they had a whole team of people flyer went out in the community We were invited to to come in to sign a paper and they were going to take blood samples and a Number of other tests were done Everybody said well it appears we do have a problem with diabetes It might be good to kind of do prevention and find out and and all of that to say that in the end I mean they did all of this over several weeks the added all of this data all of these so-called experts Then we didn't hear anything and then we got a paper saying here's your your lipid count and it kind of listed it all out where we were individually But only to find out years later that they had totally Screwed up and they had contaminated many samples and Therefore all of this research Was for nothing But nobody came back to explain nobody came back to see here's why and and you know We're giving a black back the blood samples. Where did those go? Who knows who the heck knows nobody does and That's the kind of thing, you know when you that occurs to you that you Say not again. We're not going to to allow it Government of course another example I can give is that over the years and in in our community held Canada We're doing sampling of water in our community and whatnot But they weren't informing us That the levels of uranium natural uranium in our water were dangerous Nobody informed it was kind of all but lots of research at one point they do human sampling They do a handful of people but that information is not really flowing and when it is it just bits and pieces We're not scientists so we can't figure out everything. We don't have the resources all the time to to review it only to find out About 14 years ago that indeed that the levels of uranium in our water were dangerous and that we had to stop Consuming the water so that today we have there's been some changes behind you, but still drinking But a bottle water water and plastic jugs and that's a story of its own the plastics and whatnot But to show again our research was not used to help the community, but rather There was fear that there would have to be too large of an investment And let me add another piece to that We knew we had read about the radon gas issue and our health Canada had Determined what the level is going to be And I'm not a scientist again. We're looking. It's what's called 800 Baker L's While elsewhere in the world France Germany the US it was about 150 biker else much lower And eventually L Canada reduced it to 200 and there had been a few studies sampling in the community And they had found that several homes or had really really high levels of Radon gas being emitted in the home and they said we're letting you know you have very high levels of radon gas not explaining in any way what the implications might be and Keeping in mind that you may have a smoke or in a house and how radon gas really attaches itself to the hit to the dust particles Attaches themselves to your lung. You may or may not get cancer, but you have a higher level And when we attempted to go back to this government this Government department to say well, shouldn't we sample the whole community? Shouldn't we find out? They said no, no Don't worry. We've done a bit of sampling. So we had decided at time No, we're we're going to find a resource that we're going to find our own people They're going to give us the data and we'll determine How to use that data and what we found were was that there were 200 homes where the levels of radon gas were Unacceptable and we had to do something that had to be mitigation measures It took a lot of Push on government to get the resources to make it happen But again all of that to say how it was being held against us Out of a fear that maybe more resources would need to be put in or we would not need to to understand and Finally because I could go on and on about these health issues I recall after they had done the water sampling and the health Canada scientists that come to the community and they were on this Long table in our in our gymnasium and the community members ask Should we be worry worried when we take a shower not the consumption of it, but should we be worried? That this uranium in the water could impact our health Should we be worried when we bait our babies whose skin is different than an adult? That end of the table said Don't have to worry not an issue the molecules are You know cannot enter into the skin and into your body. Don't worry The scientists at that end of the table said well, we're not sure So there we were as a community totally confused and a community member then asked Would you like to drink our community water and then if you're saying it's so safe and no no we can't and again It was a lack of respect. It was a lack of protocol. It was a lack of you know, we're gonna we're gonna do it in a good Way to help the community to benefit the community. They were more more worried about themselves. They were also busy Really busy develop trying to write journal scientific journal articles that were going to benefit their own promotions Not worrying about the people and the children and everyone else in the community that were consuming this water And again examples from the past really negative examples So it makes it difficult now as we move into the present and try to think about the future of how we're going to approach it And I think for most community we do it reluctantly But we're hoping that these kind of institutes and other things that go on. They'll be a better understanding of What needs to be done and again it begins by respect it begins by understanding it begins by talking to people It begins by trying to understand the community But damn it being honest with the community with facts You know as we say we're ready to reach out and you know to the hand and work with people But you know this whole thing if you put your out if I ask you to put your out in this stove And you can get burned the first time if I ask you to do it a second time Will you trust me if I tell you it's not the stove is cold Well, you might say I'll give you a second chance But the third time you're gonna say you put your end first and then I'll put you know I'll put mine that kind of thing so that for me is the past a lot of a lot of Hurt and pain that has come a lot of mistrust You know and but from that what I've learned has taken me a while to learn are we able to move beyond this? Well, of course we can there's an opportunity that tremendous opportunity And but it's important very very important that it's not only again having been in those leadership positions It's so important that it's not only be the leadership or small Groups of people in the community, but as many people as possible Are aware of what's going on in these kind if there is research in the community and that's not easy It's easily said we talk of community. Well, let's go talk to the community Well, our community has 3,000 people you're not going to talk to 3,000 people not going to happen that way But as many people as possible at being informed I think it's an important step me question We're concerned about research You've talked about health and in Luxin and there was a research report research done in the 40s by the Federal Department of Indian Affairs Department of Health and the Provincial Department of Health testing a rare blood That existed and we were completely unaware of of the fact that that research had been done and studies had been presented at a an international blood conference in Paris In 1950 We have a lot of things that we've been Our people have been discovering about research done on us But we've only been discovering that since the Really starting in about this the late the 60s late 50s in some places in the 60s and and since then of course and research That has been done by by people about the native people and native history and so on that have really left such great misunderstanding about the native people starting with all of the studies PhD Thesis and so on About the origins of the native people all starting around Red River and they're being a mass Diaspora from there and that's the native people in Canada, which is nonsense completely Complete and absolute nonsense and so we're finding out about these things that have been Done in terms of research on us and we are Concerned about the research of the past is how much we have to either fill in the voids because there's unwritten chapters of history about the native people or Start doing our own work to correct the kinds of misconceptions also We're discovering research in the past that has Have been used by governments so without our knowledge To deny Not only the rights of the native people, but the very existence of the native people and On the second question. I want to talk more about the Pauly case in Sioux Saint-Marie But I just want to mention One research report that was done in 1985 by a man by the name of boron Who was appointed by the government of Ontario? Because they were very concerned that the payouts the annual annuities payouts for To for the members of the the people who were Part of the Robinson treaties Robinson Huron Robinson Superior treaty Government was saying what's going on here the we have to pay out more and more every year The numbers should be going down because we're enfranchising them or their their their health isn't that good. So Why is it we're? We're paying more and more every year. So boron's report at the end of it. Yeah, quite a very thick report There's just one paragraph that sums up everything he said I'm paraphrasing Had mr. Robinson known of the fecundity and longevity of The French half-breeds surely he would never have allowed them to be part of the tree So they were all struck from the rules. We've had all kinds of people who have been struck from the rules And we're now starting to find out there's various Reports that have been done in the By the federal government striking people from the rules in in the number of treaties so research that's been done in the past by governance and Forming the basis on which they They deny Our rights and our existence is Is There's something that is a concern to us in terms of On that score the concern For research in the Arctic and and particularly with anyway With with the increasing interest in the Arctic and there wasn't always interest in in the Arctic I suppose but there became a Real interest in the Arctic In terms of economic development resource extraction Issues of sovereignty Seabed mapping climate change really brought a huge huge influx of interest in in in the Arctic And Of course with it came came the research and and and the need for more understanding of processes and In the Arctic and with that came more More opportunities And a more push for any week to become involved in research programs that That addressed Arctic and he knew it issues Early on thinking that With the with the concern in the 60s and 70s over over contaminants Airborne and waterborne and so forth You know people thought that the Arctic is is pristine It'll it'd be the the best benchmark of which to to compare other parts of the globe in terms of contaminants until Someone did some research and found actually there were there There were high amounts of contaminants in in in soil and and and water in the Arctic and they started to Wonder what's going on here? So you know you'd have had long-standing research Relationships with certain programs like the northern contaminants program First Nations and Inuit Health Branch research in in in health other programs started coming around like Arctic net which was looking at climate change in in the north and and then You know even more recently the the Canadian High Arctic Research Station Which the past government to wanted to establish in in the Arctic and? So meant Inuit pushed and mobilized to become part of those those programs to to help guide and to try to have more say in how those research programs were were unfolding Sat on many research management Committees for those organizations and programs argued for board membership Pushed for better regional representation on those research management committees So over the years it's it's been a slow but developing relationship. I suppose you would you would say An incrementally incremental more involvement responsibility for Inuit in research programs in in the Arctic But with standing that there there are still many examples of where we just haven't quite reached the mark and Some some on the panel have already articulated certain Examples In the Arctic there's the ever widening gap between Southern wildlife biologists particularly as one example polar bear biologists and And Inuit elders and and hunters Who have just very different perspectives on the plight of polar bear and and and to what degree they are endangered or not endangered Great differences of opinion which which Which come about because of the processes and the way things get done and the research gets gets done You know eat being in the Arctic and and hunting and observing over Great every season over time weekly monthly daily, etc versus Researchers are coming up during certain seasons or focusing on certain seasons and and as snapshots and this has led to very differing opinions of The results of the research Politically as well I'll use the example of the of the Canadian Hierarchic Arctic Research Station where you know it were developing very good relationships with the staff in rolling out the the program and were involved in in rolling out the program only only to find the Not long ago under the past government that a very important Inuit research priority which was Inuit health and wellness was Struck from the the priority list at the highest order of Government and so you know it had no Say or recourse except to you know send letters to ministers and and the normal recourse but Just just very surprising events that you know we get left with in terms of research and and and Other examples For for a very good reason a number of researchers met in Thunder Bay at a meeting to try to Incite and force more interest in the past government of research and and Using the best available knowledge for decision-making and policy-making and so forth and this group wrote an arctic research manifesto they called it a manifesto and Unfortunately this group Forgot to include or did not include Inuit in any any of the deliberations and So in Inuit look and read the manifesto. There are many things that Inuit would have Adjusted and and some things they would have added and and So anyway had to come out again and and say well that manifesto doesn't necessarily represent Inuit perspectives in terms of arctic research It was done for good reason, but As was stated individuals were speaking on behalf of Inuit and in terms of of the past Inuit have Mobilized themselves More and more through the establishment of the Inuit knowledge center to bring together regional representatives into a national organization or a national representative committee That can start discussing these incidences and start influencing the way research happens and I'll again, I'll leave it there so I can talk about more the president and the future in the next the next questions Obviously we could tie in question two and three together in terms of past present and future and You know the indigenous communities have an interest towards self-determination Both as and that means also as individuals, but as communities as well And that's certainly something I believe it's for for communities and researchers to consider But you know I offer you an opportunity to do one round of closing remarks if if at all you desire to incorporate any of the The questions that we've talked about or elaborate on anything you've made jump yet. Thank you for today and so Here I thought you've had up some guidelines and why there were no no guidelines at the time It was because we had a tri-counsel policy statement in 1998 But there was no chapter on Aboriginal research Because Aboriginal communities had not been consulted so that's why things were there was a policy gap to be filled and the scientific director CHR took the lead developed some guidelines Ensured consultation with communities from the very beginning and several times not just token, you know Gesture, but so how the development of the guidelines and these guidelines were incorporated in 2010 Into the try council policy statement I remember Scott will be there. It was a little painful at the time But they ended up being incorporated into the what we now have as a try council policy statement and chapter 9 I just want to say that What's important in chapter 9 There are a number of principles 19 or 20 what is really important is the at the end community engagement The try council policy statement chapter 9 talks about gives examples of how can the community be Consulted it's important to recognize as has been said before the diversity for Aboriginal communities How do you engage communities? That's the key element who are these? Authority structures you need to speak with the what other protocols What what questions you need to ask but more importantly what you need to learn and and that thing that's that the approach to Start building that relationship with communities from the beginning taking the time not Watching how long is it's going to take you just establish that relationship So it's acknowledged in the in chapter 9 and what is essential as well is that? It's important to have a participatory Research approach, which I don't if any of you is familiar with that expression. It means that People involved in the research Who gonna we hope been benefit from their research are going to be involved from the very beginning from the get-go in terms of the research design who's going to be collecting the data analyzing the data who's going to be Benefiting from research is it going to be you know, is it going to be research results or does it go beyond and that's what's in chapter 9 as well That's why it's so strong. It goes as far as talking about the need to train this I mean try to provide some support for training for building capacity research capacity for Hiring local people as well be involved them in the conduct of research and a very important element as well is the dissemination of research results anyway, we talked about this from the beginning Very often it didn't take place. So how did that actually take place? So it's important to have in the engagement plan That but element really being addressed from the beginning how is the dissemination of the research results going to take place and the importance of communities looking at these results and making sure there's Contextual elements are being taken care of and not that they have the the final say but they have a very important say in terms So how it's going to be published and then the intellectual property aspect as well and and so all these aspects in chapter 9 I want to also draw your attention the importance of developing research agreements and I say this because I've been sitting on the research at xbox for several years and I've seen these projects come to us For researchers wanting to work with Aboriginal communities and you know what these research agreements were there But they were either they were not signed So actually and he raises an important question that maybe has not dealt with until now is who in a research institution Is it going to be signing the research agreements women? Is it just a researcher? What way does it have? What what are he what are his responsibilities? So and all these sensitive issue? I mean sensitive issues Normal issues that that need to be addressed privacy confidentiality Ownership or ownership or intellectual property by communities and we talked about the other codes of conduct and the OCAP principles are entrenched actually encouraged for first nations in the chapter 9 and also the licensing requirements of course in in the north But it's a very important to have make sure that in research agreements They are suggested in in chapter 9, but they were it's very important that they be there to explain describe mutual responsibilities and that Aboriginal communities make sure it's it's in these research agreements signed properly signed so that they actually have a way of Following up if something goes and doesn't go right afterwards So it's any space and I've seen as well on the already the project that involve had commercial purposes and again these issues were not discussed in the in the research agreement, so it's essential and my last word is On the need for researchers to be humble as I said to take the time respect listen And then they start asking questions and I want to refer to a Recent workshop that took place in the Wendake in Quebec City on DNA on loan Referring to biological samples anyway and all the Abuse that took place in the past and the important attention regarding access to data research data right now and Administrative data and health data and so you may have heard of that explosion of you know big data Everybody wants to have the data in Canada. They're developing partnership with an international You know our organization to be access to be able to to use this data So I think this is something that should really be kept on the on the radar in terms of how our Opportunity is going to be able to protect their data not just that it's going to be used not but treatment But for other purposes, so I think that's what I see as a very important challenge that needs to be discussed and Tcps probably needs to be needs to be stronger and more demanding regarding that important challenge Self-determination is not what we have now for sure It's not how things have been working The past over 150 years certainly in the relationship we've had there has to be a major shift I mean it's unfortunate that Having been around long enough hearing this in the early 70s that we were at a juncture in our time that this shift Was going to happen and throughout the 70s I heard it throughout the 80s throughout the 90s now We're in 2000 we're beyond that we're at this juncture that things are going to happen You know and and we continue to hope that it will but and an understanding that Certainly from my perspective is that research is an important component of that self-determination that we've always had We've always had but it's trying to articulate it in the daily activities of what we do and I Encourage you in whatever work you're going to do Do do not ever come and appropriate Who we are identity our culture our ceremonies they are too Sacred to us respect them support them understand them Maybe even live by them by the teachings that will come But don't begin to do research on them so that you can come back to university and Kind of impress people they belong to us too much has already been taken But our self-determination I You know I I don't believe that I will see it in my lifetime the kind of self-determination that our elders speak about the kind of reconnection and respect that We justly deserve But I am hoping that our young people that are On the path of they are and then we're seeing a lot of our young people that have sought balance From the academic and learning but also of who they are and that reconnection Not all but many that I meet I get the chance to speak with I just sit back in awe and Say wow and they're strong and they're filled with that Strength that carries out in a good way. I'm an angry angry person I'm fed up with things but the young people are balanced and bring that and I encourage them to do that And I view my role now to support them and encourage them to be that voice so that indeed we're not moving We're not doing the cha cha sideways backwards, but we're doing a forward Dance the dance of our people around the circle of wholeness and connection. So make which at the outset I forgot to mention that Yes, my name is Tony Belcourt and That's what I have my own history, but I'm proud to say that I'm Christy Belcourt's dad If you don't know about Christy then Google her She is one of Canada's Foremost Aboriginal artists having been Received many Acknowledgements the first The government in general's first award given this year Inaugurational awards there were seven six people given Awards for innovation five of them were all science and Technology and Christy was in art It's because she's taking our traditions and our values That are embodied in our art the mighty people are known as the flower beadwork people our knowledge our Indigenous way of knowing is embedded in our storytelling as Oral peoples That's where our knowledge is embedded and it's also manifests itself in things that We cover ourselves with or that we make and Christy's lifelong work now has been to Express a lot of this knowledge through art and to teach And to try to Have people understand and respect the land and All the land that gives us and the waters and the importance of Land and water to life for all things and not the least to which are human beings She teaches through Traditional medicines the cancer society in Ontario Had commissioned her to do a mural of of traditional medicines that have been used in the treating of Cancers and other kinds of things in terms of health When people are thinking of doing research about the matey people other Aboriginal peoples as well I think it's important to think about Where you're getting your information from Who are your who are the people that you're talking to that are the authorities that really know Seek out the people that really know I Often have seen Researchers come to go to talk to paid employees at organizations Well paid employees at organizations have a responsibility and they have a certain amount of knowledge But you're never going to find a Maria Campbell in a Working in a matey association somewhere you're never going to find a Christie Belcroft working in this association These are our people who are Bring a lot of lost Knowledge or knowledge that is not commonly understood even within our communities because we've been what's what's happened to us? by governments that have Stolen our land The whole question of the issue of the Indian residential school system The loss of our language Traditions and knowledge because of dispossession Dispossession of land and dispossession of way of life a Lot has been lost but not all of it has been lost as I said because of our knowledge keepers Those people who have that kind of knowledge and I'm proud to say my daughter is one of them. She's gained it She's gained it in ceremony I To have gained a lot of knowledge in ceremony. We had a nation-to-nation relationship with the Anishinaabic nation at one time based on Traditional ways to restore traditional relationships that existed for a hundred and fifty years in the case of the Anishinaabic nation of Ontario and our people in Western Canada So a lot of Things that are on the shelf About Métis people that the research that's been done and so on Well, first of all in Ontario, I know that there isn't very much around here because the Ontario government's position was that the Métis were they disappeared when when with the hanging of Louis Riel on November 16th 1885 and We have a lot of knowledge that's now vested in places like the Gabrielle Dumont Institute Which is run by Métis people that are seeking out our knowledge keepers and having them write books and produce publications for various ages And and also people who are Have we now have CDs on the Métis language and so on. We have these knowledge keepers People are going to do research The Political organizations I'll call them Have certainly have a role in the responsibility But they're not the only source When you're going to be validate what it is you're you're being told a Lot of people don't do that a lot of people are writing things There's all kinds of mythology that exists now because people have just come up with some stuff and written a book about it And it's terrible. We have a lot of work to do and then we're we're scrambling Métis people trying to undo a lot of Misinformation misconceptions that are out there But thankfully we have our own people now that are starting to do it. I echo what chief white doctor said that we have young people Now they're coming along They're they too are going to university and in colleges where people of my age weren't there and They're they're starting to bring their knowledge in an academic sense as well Thank thankfully for that so I'm grateful I want to say I'm grateful very much to The organizers for inviting me to participate on this on this panel. It's Ritching to me personally to Have my eyes opened about this whole area of Ethics and research on indigenous peoples And It's it's I'm glad to see it's there. I Obviously feel that there needs to be some adjustments to chapter 9 and I'll be urging that In the future Without a doubt my Natan Obed the president of our organization Who's out there advocating on behalf of Inuit all the time has continually said that information is important It's very important for Inuit It's important for him to be able to advocate on behalf of the people he represents the the problem he always articulates is that Often there's not enough information any way specific information for him to do a good job Or to articulate what needs to happen with these Huge gaps that exist out there in all sorts of areas from health to environment to number of issues Or a lot of information exists, but it's information that Is not necessarily useful for His advocacy and it's not information that Inuit Want to gather and and want to have gathered to serve their purposes as they can move forward with their own advocacy so Without a doubt the information isn't it is important to have and and we need to move forward and and and and get those and you need to have the opportunities to articulate their priorities and to be engaged and Involved enough to move that forward and have the responsibility be in positions of responsibility to be able to Do that and to broker Their own relationship, so it's not someone else speaking on their behalf And I think we're hearing that over over and over and and it's a challenge to to move those Those ideals forward but it's I suppose it's happening and it's happening with our our you know with Inuit youth Indigenous youth and the relationships that they're Brokering with the new guard that's coming up from southern institutions and academic institutions and the more Inuit we have in these institutions the more the exchanges occur and so I suppose there's There's hope for those of us that might be cynical over the last number of decades I would say To be wary of the new open data movement, which is I suppose needed and and and of good intention so that Academic researchers aren't squirreling away data in shoeboxes in their office somewhere that it's it's actually out there and people can get access and You know we don't want access to a lot of information that is out there And and there should be ways that you know we can get access to that and that can't happen if it's squirreled away in a shoebox in someone's office but at the same time one has to be wary that That the the open data movement can also become another tool of colonialism and one has to be very wary of that Inuit in gathering their own community-based research have some information that they don't want to share and That is proprietary to individuals into communities and and so there's a lot of things to work out in this area of open of the open data data movement But it's it's there and it's coming and and governments are signing on and So I just I just highlight because of that because it's something that we're finding. We're having to to deal with Currently right right now For for Inuit, I would say that to move forward We we need to improve Academic research ethics board in the way they function The the research ethics boards do their best and it's a really tough job if If you if you ever Get into the position of being on a research ethics board you'll find that it's a very very tough job and and everybody's doing their best but Without having the expertise the indigenous expertise at the table the results that come out often are our are not What Inuit would would hope for in in many cases and This leads Inuit to think of Forming an Inuit research ethics board or finding new ways that Inuit can be in control of Those kind of decisions and those kind of ethics and in control of information and Having possession possession and ownership of their own data and access to data that is Gathered by by others and these are things that Inuit are moving forward In a big way and and and taking this this seriously One last thing I'll leave you is also the issue of benefits accruing to indigenous peoples to Inuit and remaining for Inuit in the Arctic and That that we have a long way to go, but we're having discussions about having institutions and University in the Arctic so that Inuit can Enjoy Research or gathering information Without having to to leave the north that come down to sever family ties and and and so forth so those discussions are are are happening and and hold great Promise for the future and I suppose for moving forward just you know, we all have to think about finding ways to combat Colonialism in research and finding other ways to To promote reconciliation and in research as well and I guess we all have that that responsibility all of us here so I Guess I'll leave it there and thank you very much. I've really enjoyed being on the panel. Thanks very much everybody We hope I'm I hope they'll be available for us throughout the lunch hour and the week and thank you I hope you enjoyed the panel