Well, all right, we're recording Sergio, calm down. All right. Welcome everyone I'm going to call to order the October 12 meeting of the governance organization and legislation committee at 903 am pursuant to chapter 20 of the acts of 2021 this meeting will be conducted via remote means members of the public are able to access the real time via zoom or by telephone. So I'm going to go through. I'm going to pause and give him a dog something so that he'll stop barking one second please. If I start barking, can I go home. Nice try. We'll see how long that lasts. Okay, so let's do a sound check. We'll start with a Nica. Yeah. Good morning. Good morning. Jennifer. Here. Hi. Hi. Here. All right, and we have two Athena so you have to. Oh, you can you say hello on both or just the one. I'm just going to use one one voice, so we don't get confused. All right. Nice. Thank you. Thank you. Thank you. Thank you. I said, Mandy will not be here today. And I have to leave the meeting at 1030 for an appointment in North Hampton. So I have a sense that we'll be able to get through what we have on the agenda before them. But if not, a Nica, if I could pass it over to you at that time, it would be great. I think we're going to be fine through everything. All right. So I'll just quickly review what we're going to what we're going to work on today. First, we have some minutes to approve. We are going to review that water bylaw and so great that we have a Nica. I think a Nica is the only one on TSO here, right? Yeah. Okay. So that that will be great. And then we have a couple of other questions. And then we, let me just, I just want to look at my, we had, we did receive this morning to sample matrix from Anna. So we'll have those to look at and to begin that. It will really be a second discussion of the matrix. And when we get to that, I'll, we can talk a little bit about process with that. She's been to the council for a long time. And she's also been to the council today because she really wanted to be for that. So we, we won't be doing that, but we will review section two, eight, nine on the council policy on making recommendations for town council appointments. So I think I'm going to put the dog outside. Hang on. And then. the documents. Yeah, one thing, I'm having a hard time, we get a lot of things late. And so having the matrix just coming in this morning, you know, I haven't seen it, I know I haven't been here, but it, I would like us to get to encourage people to turn in things so that we actually even have yesterday would have been all right. You know, so I think it happens a lot in this committee and I'd like us to figure out a way to not have that happen so much. Yeah. Yeah, I appreciate that.  Yes, yeah, I was in Florida. Just to give you a little context, Anna came last meeting. Oh yeah, I read the minutes and stuff. You read that, okay. Yeah. And then she was hoping to be able to get us some samples and just time I think probably got the best of her with that. So we could, we could hold off on it or we could just sort of look at it together here and see if there's, you know. Yeah, and that's fine for now, but there's a consistent pattern and over in this committee and I'm not sure why and it's not anyone's fault. Right, right. Send us things late and I think we need to be a little bit, I don't like looking at things for the first time. I like to do my homework. Totally understand. Yeah. Yeah.  Yeah, I just want to say, so I don't know, for whatever it was for me, I find that this maybe it's set on my phone. I'll often like this morning, I went to the public file, you know, just online to see if anything was there and it was only the agenda. So are things, I'm just wondering if they're getting posted. Yeah, I'll post them today. Oh, thank you. But so there, the SharePoint has everything in there, which you, you know, you have access to the SharePoint. Right, I did go to the SharePoint, but I guess in this morning, I just like clicked on first thing because I wanted, I did want to see the matrix. Yeah. So whenever I went to the public file and we still just wasn't, the agenda was the only item there. Yeah. Athena doesn't even have the matrix yet. I got the matrix five minutes ago. So, you see, that's not okay. All right.  Sorry. Well, you know, I guess, and one of the things I brought up last time is when Anna had agreed to put some sample matrices to us, I had sort of cautioned that, you know, we all have a lot on our plate and is that sort of the right process, I think. But, you know, it is what it is. So we'll try to do better, I guess, is what all we can, we can do. You know, I really had very little, all right, hang on, guys. Hang on. Let me just do that. Yeah. And I'm not blaming anybody. I'm just, you know, I really, I just get, I don't like not having time with the material. Right. And it isn't because it's not like we're putting the material together. We're sometimes waiting to get it outside. Right. Right. Yeah. So no shame or blame attached to my comment at all for any one individual or group, but so I will be quiet now. Yeah. But you know, this is actually a question for me as a chair. I would like your feedback on, so I waited to put the packet items into SharePoint. And I was waiting for Anna to send me some matrix stuff so I could do everything at one time. I didn't have to do that. I could have put the, you know, the, basically I could have caught everything would have been a copy from last meeting into this meeting's folder, which I've tried to be in the practice of doing as opposed to saying just look at the other folder. I think you copy it from the last folder to this folder. Right. So if that would be more helpful, like the water bylaw was reviewed in TSO on Thursday. So that and like the old materials from last week could have been put in. And then if we got the matrix, we got the matrix. So there's two things we're talking about. One, the items that we have and getting those into the folder and two, if we're accepting items from outside places, we want to have a deadline and say if we don't have it by 24 hours before the meeting, then we're not going to take that item up, even if it's on the agenda that was produced a week ago. Is that what I'm, is that am I hearing that? Does that seem like we could have consensus on that? Well, is anybody else irritated by this or is it just me? If it's just me, I'll deal with it. I agree that it's helpful. I'm sorry, Jennifer. Go ahead. No, no, no, go ahead. Go ahead. I think that it's helpful if documents are in ahead of time, but maybe if we do have maybe some flexibility, Michelle, at your discretion, that if something is coming in and it is within that 24 hours and you feel, okay, this is something that, you know, I can add now and there's at least a possibility that we can go over it, then we have that flexibility as well, because, you know, sometimes if things are out of people's control and that we might, you know, we could be cutting ourselves off from something important if we have such a strict deadline. Yeah, I can totally see it both ways. Jennifer, were you going to? Yeah, I mean, I agree with what you both said. Some of it has to do with the size of the documents.  Yeah, you know, versus like maybe one, it's still nice to have the time to consider something, but I've even seen it for town council. Sometimes something will get in at the last minute. It's 15 pages and there's just no way. Okay, you know, and I'm gonna maybe just, I don't know who the right person is to talk to about this, but like for the water bylaw, I knew to go to the TSO packet, right, because I knew it was on the agenda. But then when I got to the packet, I couldn't actually find the bylaw because it was embedded in a memo that Paul had written. It was like in the bottom of the memo. And I don't know, Anika, if there, it sounds like from what Athena's response is, there isn't a separate document with the bylaw. It's just part of that memo. Right, but this could also be my fault because I know I probably should have sent you a message right after and I think I did the, for the previous meeting. But I, so that, that is probably my fault because I probably should have sent you a message right, you know, after the meeting on Thursday for you to look out for it. Yeah, maybe, but I didn't have the week before. So this way at least you'd be alert. Yeah. You'd be alert to it. So I don't know if I have my weeks mixed up and I know I sent you a message about it, but it could have been from the the previous meeting. So if I did not send you an alert last, after last Thursday, my apology, because that would have alerted you to know that, you know, it was ready or coming. Actually, I should have sent you a message with the, with the bylaw. Yeah, thank you. Well, so I think with the regulations, definitely we communicated about that. I think it was the bylaw that, and like Anna had last time talked that the bylaw was going to be changed in TSO, but then it sounded like I looked at the minutes or something and it was maybe not the minutes, I looked somewhere that said it was approved as is it sounded like in. So, but I don't know if that's the practice, like does one share after every time you take up business? Are you supposed to let the next person who's taking it up know that it's done? Like I'm not sure. To my understanding, yes. Like something that is coming from TSO and is coming to to GOL that I should be giving you the heads up, sending you the document so you know, so you're prepared to add it to the next package. Okay. All right. Yeah, I guess because we're kind of like the last stop on the train. But that's that is my understanding. Okay. Sort of like, yes, Athena, please. I agree. This is like a chair to chair communication kind of thing. If there's if there's a part of this that I can help with, but I try to send minutes at least immediately after the meeting so that you all can communicate with one another about what's ready for the next committee. And especially when things are moving from one committee to another, it's helpful to have some, you know, motive, you know, here's what we've here's exactly what we voted. Here are the regulations exactly as we voted them. And I agree that the bylaw, the water bylaw was a little confusing because it was embedded in that memo. But if I can help with that communication at all, please let me know. Fine. I say, Athena, you do more than enough. Thank you so much. You have advice on that. And you know, I've dropped that ball. And I think that that is it's completely reasonable for chairs to be able to follow up with the next step, at least in my opinion. I do not feel that we should put anything else on Athena's plate that we do not have to. And Athena really, and also she takes everything that comes from this committee to Lynn for the agenda setting because it's sort of this is the last stop for most measures. So it's ready for council after it comes out of this meeting. So we've sort of been like haven't had that. I haven't as the chair had to necessarily worry about that as much. I, Lynn will know, but it's usually because Athena has, you know, let her know. So anyway, yes, Athena's ground zero for the council. Like I was, I had a question yesterday and I couldn't do I call this, this, this. I was just like Athena. Right. I wouldn't know what was going on without Athena. I'm so grateful. All right. All right. That's enough of that. And I take it, kid. Take it. It's right. And here I'm looking at both Athena's. I'm trying to guess. There it is. A visual metaphor. Well, I will endeavor as the chair to do better to get things. If whatever I do have in as soon as possible, at least into SharePoint. I think that Athena probably prefers to wait until everything's in there to put it into the public. But at least we'll know what we, what's in SharePoint. We'll try to get everything in there as quickly as possible. Yeah. And I just want to say one more time. This is not about shame or blame. And I think you've been doing a great job of chair committee. So All right. So let's go and let's take a look at that water by law. So I'm going to pull it up here just to give me a quick moment. And we, without Mandy, you know, it takes a little bit longer. Um, all right. Where is Mandy? You know what the TSO last week, all of the things today. So at TSO last week, I was just there for something else, but I said, I was just in awe of how fast the bylaw had gone through. And I think Anna thought I was just talking about your meeting last, last week. But I mean, the whole process, we were getting emails on the council about issues with this. And then the next thing, no, we have a bylaw. It's, I've never seen anything move this fast. It's great. Let it be an inspiration. Athena, would you be able to allow me to share screen? Please. There we go. Should be. Anna and, uh, both Anna and Amy had, they really dedicated so many hours of work into this. Um, yeah. Absolutely. I had mentioned the issue when we, you know, we were getting those emails initially to come up in the district and was in a newsletter. And then when I tell people now we're at this point, they're just like, Oh my God, we had an issue and it's just, it's kind of solved. The year. Maybe. Maybe. All right. I'm trying to zoom this a bit. While I'm doing that, Anika, would you just tell us, so, um, we finished the regulation. So would you give us an update on TSO and their review of this? Yes. So, um, again, because of the, um, they, you know, all the back and all of really the, the painstaking research that had gone on, um, by both Anna and Amy at certain, but, you know, really taking in just about every concern, um, that had come from committee members and comment, uh, by the time we got to last week, it was, um, everyone was had, had been, you know, informed and even in ways that there may have been, um, even in ways that people had been confused, um, you know, it's cleared up. And I think also just really, um, impressed, impressed that it came to this point, uh, so quickly. So there was, um, so it was a unanimous yes. And, um, we had actually, uh, this had come up before Universal Refuge. So in comparison, this really just in, in every way, just, you know, it just flowed on by. Yeah. Yeah. I read a couple reports about the meeting and it sounds like that's very true. Yeah. In terms of the comparison to Universal, uh, Refuge. Is that what it's called? Refuge? Yeah. Yeah. Yeah. So yeah.  So good. All right. Um, so, and do you know, was this or did it, did it have to be or was it reviewed at all by like the town's lawyer or anything like that? I see like a lot of references in here, but, or was it just researched by Amy and Anna? You know, Guilford had been involved in, please excuse me, Athena, maybe I was to speak to this, um, some of the folk of this had gone on, um, while I was away, um, or out of commission, but I, I do believe that they sought out multiple, um, opinions and, um, from necessary sources, but I cannot recall it. I wanted to speak, um, whether it went through the town court. Athena, do you know if there were any other, um, in terms of just action ability? Is it, was there anything else with respect to that for this bylaw? I haven't heard that it was reviewed by, um, the town attorney. Um, I think the only thing that squirrely about this is that the, we would want the bylaw and the regulations to sort of take effect at the same time and the bylaw doesn't go into effect until 14 days after. So I think that's just about crafting the motion, um, at council to make sure that everything is is happening at the same time. Okay, perfect. All right. So then let's just, can everyone see this a little bit better? Should I do, I can't see it at all. Oh, you don't see the screen at all, or it's just, nope, nope. Just a black box for me too. Oh, that's very strange. Okay. Let me see. Is that for you too, Jennifer? Just a black box for you? Yes. And Anika? Yes. I see, uh, that it says you are viewing Michelle on the screen, but I am not. Okay. How about now? I just downloaded it to try if that would, um, let me try something else. Anything now? No, maybe Athena, can you share? Yeah. And I can also stop and try again. Like stop the share. So now you don't, you're, it's back to normal, right? All right. Let me try one more time here and then we'll see. Anything now? Uh, I think it said you were starting to share your screen. There was a flash of white, but it's black again. Interesting. It says participants can see your screen. So I don't know why it's not working. I can see, there we go. There we go. All right. Is that Athena or Michelle? That's Athena. Okay. Got it. Thanks, Athena. Okay. So I think. This is the wrong document. There it is. There it is. Yeah. It's at the bottom. Okay. All right. So let's start from the top here. And we'll just go through, I don't have a lot of experience. We haven't reviewed a ton of, you know, these bylaws like this, but Pat, you probably from last year have some experience doing this. Do you have any recommendations about how to go through it? If people probably just read through, I mean, if people have already made notes or something like that, we could go that way. Okay. I'm going to read through it again. And we can start, maybe just start with A and. Yeah, I guess. Yeah. Sounds like. Any more. I'm sorry. No, I was going to ask. So the criminal enforcement piece, Anika, is that these fines are going to be set as a separate matter? Is that right from as part of the regulations or Athena, do you know if like the fines are going to be a separate piece of this or just hasn't been determined or? As far as I know, the fines are included in the regulations. And I think some of the intent with the regulations was so that we didn't have to update the bylaw every time we wanted to change the fines. And then there was some delegation of authority in the regulations. So that will need to be changed. Okay. Okay. Anybody have any comments on A? I don't. All right, then let's move to B. Are we, are we using Oxford commas? I mean, do we want to get picky here or because I think after managerial, there would be a comma, right? Yeah. I usually put that in like that. Yeah. And I think that we've used it up above. I'm going to, Athena, I'm going to take notes, I guess, because we don't have a word version of this. I'm not sure who's holding the word document, but I'll take notes and then I guess send them to you. And yeah, to you, I guess. All right. So we're going to do and then see. Okay. I'm just recalling and feeling like I need to bring up. So maybe I'm confusing another matter, but wasn't there some, that's probably the residential bylaw, but so that we did not decide to pass off the amendment of the regulations to some, so the town council is always the body that will amend the regulations. Does anyone recall anything related to that? And you repeat that, Michelle? Yeah. Yeah. When we've had through the regulations, it was agreed that the town council will always be the body that will amend the regulations. Maybe I'm confusing this with something else where we said the town council would create the regulations, but then another body, then them. Well, in this case, we are the water commissioners, so we would. Okay. I may be thinking about with the board of licensed commissioners, with the fees for the rental permits. Yeah. That's different. That's different. And also, I think the fee, we didn't we recommend the fees? Oh, I don't know. Okay. All right. Going on. So, all right. Dee? Michelle, if I can offer a suggestion, I'm not sure that we're clear on the violations and the enforcement and the non-criminal disposition. I think that they're included in the regulations, so this will need to be reworded. And if the committee's not ready to reward that section, comfortably and recommend it to the town council, then I think we might need, I don't think I can advise you on how this part should be written in order to coincide properly with the regulations. So, I think we might need some advice on that if members aren't ready to fill in these blanks. And I also had a bit of confusion and I could be confusing with something else that the fees, that there may have been discussion that they have to be reviewed in some sense annually. So, what that is is updated. So, I see the theme there. Do we want to pull up the regulations and just take a look and see if we can figure something out or do we, who would be the right person to talk to about this, Athena? I opened the regulations and I was, because I thought there was, there is a fee schedule. And I, my memory and Nika is the same as yours, that there was discussion about the fee schedule, including the water and sewer rates in here. But I thought there was also fines, there are fines, but I'm not sure about the enforcing, the enforcement person, if it's the water department or if we want to say DPW or if we have to name a person. I'm not sure about those. I'm sorry. There is fees for, there's fines for violations. Of the water use restriction and violation of water regulations. I'm trying to find if there's any. And this bylaw is specific to violations of water regulations. Right. So, like the water use fees are probably separate, I would imagine from this, but. Oh, the appendix does list, the fines are for violation of water regulations, is one, and then violation of water use restriction is the other. I don't think there's an enforcing authority. Okay. So, yeah, I'm sorry, I can't advise better on this. No, that's okay. Reach out to Anna, so I think she would have the short answer. She really does know this, like the back of her hand. Yeah, yeah, yeah. You just reached out to her. Okay, perfect. All right. Thank you. Yeah, let's, then we can maybe wait to see if she gets back to you. That's great, because this is saying enforcement pursuant to MGL. So that's a whole another, which MGL is it, you know, pursuant to and. There are restrictions about how high a fine we can, we can charge according to MGL. So I think that's the section, I think there should be the section that says we can't, we can't levy a fine that's higher than a certain dollar amount. But then in the restrictions, it's that dollar amount per day. And that's how we get above, you know, that's how we charge more for a fine. If it's continuing it for days and days. And is there any, you said that you saw Athena criminal enforcement in the regulations, was there an amount or is that still yet to be, like yet to be determined based on what we're discussing? It is water fines at the end of the regulations. And there's violation of water use restriction and violation of water regulation. I don't think it says criminal. Okay. No, there's there's no criminal enforcement in the regulations. So this is again, I'm not sure about these questions. So I think we need some, if Anna knows that would be great. Okay. All right, well, let's I have a word. Oh, please, great. So the fees will be set annually as they are now. This is why they are separate appendix and not part of the regs. So she's also asking if it would be helpful for her to jump on. Yes. And while she's doing that, there's one small correction in E for both water and sewer sewer from Jersey. It's hard to say that word. So can we do that at the same time? It's at the same time as general notice, it should be as a general notice. Very money at the same time as a general note, and it's in both the sewer one. Got it. Okay. That's the only grammatical thing I saw. Okay. This hearing notice on the town website. Is that what's that called a semi colon provided? However, where are you? Yeah. The town council shall similarly notify business owners and residential customers by posting a copy of the public hearing notice on the town website. I'm just not sure of the use of that punctuation. Yeah. Why is there a, like a, why is that there? I'm just, does anyone know? I just provided that the, like, get rid of however as well. By pusing. No. I just want to let you know on us here. Okay. Let's go with the, yeah. Hi, Anna. I just saw you because of the way my screen. Can you hear us? Yes. Can you hear me? Yes. Okay. Hi. All right. So we are just going through this bylaw and realizing that this top piece about criminal enforcement, enforcement pursuant to MGL and non-criminal disposition, we're not very clear on how that gets into harmony with the regulations. So we were hoping you could help us with that. Okay. Hang on. Let me get up to speed here. Sure. So your question is, can you repeat your question? The question is the criminal enforcement, the enforcement pursuant to MGL, blah, blah, and the non-criminal disposition. Are there already, where are those fines being established? Have they been established? Are they, or is this just like sample? Yeah. I believe those are established by the state law. I don't know what they are off the top of my head, but I'm fairly certain. Those aren't something we set. Those are something that I think it's like the $300 fine. Okay. Do we know which MGL that we're referencing here so that maybe we can look at it? Yeah. I think it's the ones that she references in bullet point A. Chapter 40. I can look those up if you would like me to really quickly. Check it. I think that MGL is the maximum fine that we can set, but there's also a missing penalty here and enforcement by, and then the regulations don't refer to criminal enforcement or non-criminal disposition, but they do talk about fines. So I think we need to make things sort of congruent with one another. I'm not sure. I'm hoping, Anna, that you have some insight into how to do that. Okay. So I think that the enforcement we set in the regulations, is that right? Or no. Sorry. The enforcement we set with the town manager. Hang on. I'm reading through. My brain is having trouble switching gears from what I was just working on. I'm sorry. Interestable. Athena, if I'm remembering correctly, we had put in the regulations that enforcement was through DPW and the town manager. Are you remembering the same thing? I just looked at the draft of the regulations that I have, and it doesn't say the word enforcement in them. Cool. Great. That's why I'm having so many questions. I'm having a hard time answering these questions because it's not exactly written out in the regulations, and then I'm not sure if this section would just indicate that these fines and penalties are per regulations or how we want to reference what's in the regulations here in the bylaw. So when we look at the regs, I'm trying to find the section that talks about the, let me see if I can find the page. Sorry, Al. So in resolution, in the resolution process, we talk about how violation of these regulations will be determined by the water, by the DPW, and they assess appropriate action, including if a fee or fine is involved in accordance with these regulations. So we don't say the word enforcement, but that is the section where we talk about what enforcement would mean, and it's when folks are found to be in violation of the regulations. And there's an appeals process and things like that. So it's on page six, starts on page six of the regulations. So I think what Athena was suggesting could be possible is to say, to have some language that says the violations are pursuant to the regulations. Is that what you were saying, Athena? I'm really not sure. Okay. All right. It sounds like we need to maybe get more information on this before we can, Anna, go ahead. Sorry. Yeah, no, I just want to make sure I'm understanding this. So you're talking about this first part up top where we want to fill in those Xs, right? Yeah. So okay. So what we need to do is, and I can do this, but what needs to happen is we need to write in what the fine is per violation. That should be set on MGL. I believe it's 300, but I'll confirm that, or that 300 is the max. And then enforcement pursuant to, I'll read through these sections to confirm what the amount is, but based on the regulations, enforcement is by the Amherst Water Department. That's what, I mean, that's how we wrote it in is that they are the ones who determine an issue of the fine. So is there, did you intend for there to be criminal enforcement on this? No. I do believe so. Although I guess, Athena, when do you use non-criminal versus criminal? Is that dictated by the way the regulation is, or is that just what we want to do? I'm trying to look at something right now. I'm sorry. I'm trying to look at three different things. I don't have good answers to these questions, and that's why I suggested before when we started looking at these, and I realized that there's still these missing sections that we might need, we might need some advice about how to make sure that all these references are correct. Okay. So let me make a note of what needs to happen then. And I'm sorry, I don't know why we left those blank. Sorry. Well, we were just saying how wonderful, wonderfully quickly this whole thing has moved through, and really giving you a lot of- You got to GOL. Don't give me any. No, she was saying how much you have put into this, and it's all very true. So if we have to slow down for a moment, I think that's okay. Well, if I'm not mistaken, I remember this being explained clearly. But yeah. So I'm going to email Amy and Paul, and I'm going to ask, one, does it have to be criminal enforcement? And by the way, if it's criminal enforcement, I mean, only the police really can enforce it. So in terms of an enforcement party, if there is a criminal enforcement, it's the police department. I don't see why the criminal enforcement throws me off. The only reason I think that it might be, the only rationale I could give to it being criminal enforcement is if it's for some reason required by state law that it be, right? Like that's the only way that I can understand that being a criminal enforcement. And so that's why I want to go through and look at those references. Okay. Anna, I need to go through and revisit references. Anna, while you're writing that, the first question I asked when we pulled this up is whether this had been reviewed by KP law. And I'm wondering if given all of this, like state law stuff that's in here, if you have any feeling about that? To my knowledge, it has not been reviewed by KP law. I would be comfortable with a KP law review, and this also came from Paul. And so I'm not as, my discomfort isn't as high. Yeah. I hear you. Yeah. Maybe that's a question, though, that we should also be asking is should this be reviewed? Just because I've now with a couple of other things, including the street signs and for houses and buildings. And then I just got a legal review back for discharging of firearms. And it made me aware that like some of our bylaws aren't even in line with the state law. And that's really concerning. So in my mind, so I just want to make sure that this is going to be in line with state law. Michelle, if I may, it seems like the appropriate thing in this enforcement section is to refer back to the regulations, because it doesn't make sense if there's a fine in the regulations. It doesn't make sense that we would have to amend the bylaw and the regulations, especially considering that amendments of the regulations require many of the same things that the bylaw would require for us to the steps that it would take to change them. And I think the intent of having regulations separate from the bylaw was that we didn't have to go through those same steps twice. But again, I think that it would be helpful to know from somebody who knows absolutely for sure that we can put in according to regulations in this enforcement section rather than spell those things out. Yeah, because the regulations do reference specific fines and MGL sections that correspond. So a lot of the fines specifically for like tampering with a water meter are set by the state. And so the regs themselves reference those. And so I can I can do some of the cross checking. But I think like Athena said, it's trying to just reference the state law so that we don't have to we aren't actually really setting them. They're just it's just referencing what the state says. There's some that are set by state law, but then the regulations also have fines. Right. So there's there would be some reference to MGL. You know, to me, it seems appropriate that there would be a reference to MGL about what fines are levied by the state. But then there are also penalties in the regulations too. So it seems like we would need both references. Yeah, that makes sense. That makes sense. I'm also wondering if bylaws require a certain form that like include has to include non criminal and criminal if there is criminal bylaw itself. So somebody doesn't go fishing, you know. Yeah, the fines, Athena, that yeah, yeah, that makes sense. The fines are established in Appendix A, which I think Anika mentioned to y'all is the the how we're kind of trying to do this so that we don't have to rewrite everything is that Appendix A is what's revisited. So the water fines and the violation of water use restrictions are are 50 for the first defense 100 for the subsequent but that's in that's what as far as I know that's the only thing that's established by the regulations and not by MGL because everything else right below that I'm on page 26, the last page of the regs, everything else says as prescribed by Mass General Law. So I think that that's my understanding is those are the two that we set as a town and everything else is set by the state. Yeah, and it would be interesting to know when when you know we are clear it could they could just be clearly defined with like a criminal enforcement regarding an entity that would be seen in violation of public health safety. Environment and general welfare as included in in A. I was I was actually just reading an article to think about where and you know it definitely wasn't here wasn't even in Massachusetts but it was in in regards to very large apartment complex and management and owners like there were just all kinds of problems with pipes and therefore pollutants and whichever so and there had been multiple fines and warnings in documents so I know that that that was criminal so it could hopefully they're just clearly defined. Yeah all right go ahead. No I was just gonna say Anna it sounds like you're going to write to Paul and to Guilford and ask these questions are you clear on what questions you're asking? I want to read them out loud one more time. Question one is does it have to be criminal enforcement and why? Question two is if so can DPW enforce that wouldn't have to be APD? Question three is Anna needs to guess not a question but I need to revisit the references just to confirm. Question four should we get a legal review is this aligned with state law? Question five is what are the fines set at the enforcement say the max are we going under that or are we saying that it is the max set by state law? So basically we're filling in the X's and the titles but we want we're doing that based on state law because our regulations have the local fines and those should be in the appendix not in the bylaw so that we don't have to revisit the bylaw every time we want to change the fines. Yeah okay great Jennifer. Yeah I just have a question so since there still are X's wouldn't it come to us after those and come to GOL after because we couldn't really finalize this until that's is that correct? I mean I think that if you're looking for clarity consistency and actionability you could confirm my work by saying you know by kind of by duplicating it and saying this is what Anna said the state law says we're confirming that and that's fine but as long as I think we are clear on what the numbers are pulled from I don't necessarily I mean it's up to you all but I also don't think it needs to come back to you as much as it just stays with you right now like you don't vote on it yet. Yeah oh okay so this is my just for because I'm always trying to be clear on what the route is and I guess I asked that so can it go to council with the X's or it can't until those are I think need to be filled in I mean we need to know what we're presenting and then the council wouldn't have to vote on this right? Yes yeah and everything would have to be filled in at that point? Yeah yeah I think that's for it to come from you all filled in and I'm sorry that it wasn't I don't know I don't know what my brain was thinking. No no no that's okay I was just wondering you know what or it could be filled in and not have to come back to GOL could go but you're saying it's just staying here we're not voting now. That's up to you. I haven't decided yet. Yeah I think that's up to you all. And I'm sorry I just referenced two readings this does not need two readings is that correct because it's not a zoning bylaw it only needs one reading? That's not correct we need two readings for regular bylaws. They need to be posted on the bulletin board and so forth. If I may Anna can you add to your questions do we need to reference the enforcement in this section or can it just say um fines like reference the regulations you know regulation fines set by regulations in accordance with MGL such and such that's what it says in other bylaws rather than saying criminal enforcement enforcement pursuant to and non-criminal disposition and so forth that just says fines fines set by regulations in accordance with MGL. Yep I will ask that question Athena my my question and response would be if and I need to I'm pulling up the regs now to search but if the regs don't specify we would need to make sure the regs specify the appropriate sections of MGL. That's right and so it looks like they all that they are all referenced here yeah 165 section 11 that seems to be the the one that's referenced most 165 section 11 is intentional injury or interface with a water meter and so I want to so my question is my question is the the MGL reference is that the reference that sets the maximum fine that we can charge per day or do we need to include references to each MGL that sets a fine for a water violation. I think we need to include reference for each MGL that sets a fine for water violation because they seem to be specific to the type of violation like the one that I pulled up now is just for tampering with a meter. MGL section 40 chapter 39 is pollution of water so they seem to be different and they're different fine amounts. Right so if the bylaw refers to specific MGL and fine amounts then if the MGL changes then we have to update the regulations and the bylaw which is why you know what that's what I thought the intent of having the regulation all of the fines included the couldn't be included in the regulation so we don't have to update them in both places so my question is can we just refer to the regulations in the bylaw rather than having everything duplicated. I think yes my worry is does that mean we need to go all the way back through the regulations process. So could I just jump in I I'm actually looking at this memo that Paul wrote which is the process for adoption of proposed water use regulations and I'm just wondering if this might give us some insight into because like in that first under recommendation it says he's recommending adopting a general bylaw that permits the council to adopt water regulations and then beginning the process to amend the council rules of procedure to allow the council to adopt regulations with fines without needing to include them in bylaws to adopt regulations with fines without needing to include them in bylaws does that. No Michelle I think sorry I think you're reading that that was one of the options that wasn't what he was recommending I think he was recommending no can we yeah are you able to scroll up on that a little bit Athena because I'm looking at it on my computer okay so under recommendation the two pronged approach oh I see I see I thought you're talking about something else sorry so what does that mean begin the process to amend the council rules of procedure to allow council to adopt regulations with fines without needing to include them in bylaws right now so Athena you had said that you didn't think the fines needed to be in the bylaw but Paul is saying that we need to update our rules of procedure in order to do that he seems to believe that we have to have fines in the bylaw is that am I understanding this situation correctly that's how I was reading it too but I also am about to pull up the rules of procedure rules I'm sure you're already on it I'm not sure that there are references to leading extra steps there's there's the word fines isn't in any council action that provides for the imposition of a fine or penalty shall be in the form of a proposed bylaw or regulation so I'm not sure so it seems it seems that we've already done that so I I feel like there are too many questions outstanding okay that we're not sure about to move forward right now but that's just my suggestion okay I agree and I think we can I am wondering though if this second prong of the approach that Paul's recommending is some another question that we need to ask I mean this was done in February of 2022 so actually are you saying Athena that perhaps since February that rule was changed I do remember I think something along that line now that when we did the rules review is that what you're thinking that that was already done I'm not sure if that changed since February I'd have to go through the drafts of the rules and what we changed when to know for sure but the the rules as they are now allow the council to impose a fine in the form of a bylaw or regulation not only a bylaw so I think in my in my reading of that in the rules I don't think we need to change the rules to allow the council to set funds according to regulations okay all right Anna will you do you feel would it be helpful if you copy me on your email just to keep me in the loop about what's going on or at least yeah that would be great and maybe Athena too okay so are we ready then to go back to the semicolon yes I would like to go back to that semicolon and actually ask Anna about it while she's here too if that's okay in E Anna down the it's correct the semicolon is correct yes it's a conjunctive adverb it's bringing two complete thoughts together and some of the conjunctive adverbs are things like however therefore consequently okay what I was going to say conjunctive adverb um but do we need the provided okay so provided however yes because um it makes more sense with them yeah it does make more sense provided however I just yeah I don't know something seems so off to me about that but I think if that uh it has to be weird yeah trust me I do I do watch Mandy he'll come in and go no but no it's fine it's good well Mandy's away the comments shall play all right so um any other comments or questions on this all right Michelle I'll CC on this I'm going to try to get a call with Paul this week just to confirm this will be continued at the 26th meeting which I can be at okay yes um I was the yes we'll make sure it's on the 26th yeah is that okay yeah we just we have a lot on the 26th because it's our first goals town manager goals meeting and then we have other other things but we'll yeah it's fine hopefully I mean it seems like there shouldn't be any big shot there shouldn't let me let me phrase this there shouldn't be anything that majorly shifts the it just answers these questions right there shouldn't be any changes to the to the three things that y'all are looking for um clarity actionability etc and so hopefully it'll go fast um we can just although if a legal review is needed it may go less fast right so we'll just wait and watch on that one yeah okay thank you Anna thank you for joining us thank you thank you all right I for some I had in my mind that that one was going to be like really quick and um you know it was a good experience though it's really good to yeah okay I'm sure it's still going to move faster than a lot of everything else yeah even if it does have legal review so right well no that can slow it down enormously kp law is difficult just a lot of yeah it takes a while on those um all right so let me just pull up the agenda here um so Anna sent us um two examples of matrix that we can look at that I can pull up here if my screen sharing will work but I can also forward to Athena if it's not gonna work um let me just Athena I'm just gonna go ahead and forward this to you is that okay let's see um it's not in SharePoint isn't no I just got it this morning so I was gonna forward I'm gonna forward it is an email to you right now okay right okay then I will add I will definitely add it to SharePoint all right so and with this share there's um a matrix and Anna says uh one she quickly put together based on the question CRC put together for ZBA and then the other is an example of a hiring matrix which is much more numbers based I think the sample matrix is the excel document that Athena will share and then there's a link to the uh hiring matrix oh no the link is embedded in the email to the hiring matrix so I think we can start with Athena have you shared yet I'm gonna try to share one more time just so we don't have to bother you with this let me just see if I can I don't I haven't received it yet so I'm just waiting for that okay all right let me while that's gone through see if we can get this to share one more time do you see my screen right now I'm just seeing a black screen again geez so you wanted me to share the sample matrix is that correct yeah let's start with that one yeah okay I just one second Anna are you hanging out for this discussion I was just checking my calendar I think I can if you need me to it's totally up to you if you if you want to maybe even just to describe explain this and then if you would need to jump sure so um basically what I looked at um what I was going to share was something that I had used for work and then I realized that I probably shouldn't share it without permission of the person who wrote it um and so I um I tried to adapt it slightly but basically the way that this worked is that the the person who is the person doing the hiring took elements of the job description um or what we were looking for and put them across the top and then put a scale of zero through three and share can't see it so um so I looked at the I looked briefly at the questions at CRC I didn't get all of them in here but I hope to just give you kind of an example again this is an example this is highly modifiable I just wanted to show you what something might look like um and basically you know the looking at the criteria you ask about experience in planning urban development community engagement other committee work that relevant experience bucket and then each person would have their own copy of this it's not a shared document and they would say they would kind of fill in sort of that where they felt the person was from zero to three saying you know this person hasn't engaged at all in town they have no relevant work experience no relevant personal experience and so I'm I'm rating them as a zero or you know they have some transferable skills that I think might be relevant so I'm going to put my comments in the in the two box and kind of note why I'm putting them there and it gives that sort of again like I mentioned last time that framing of you you're not saying there are three right you're explaining why you feel they have all of the all of the elements that you're looking for and so this is you know please don't read into my really quick drafty way of establishing the questions on here that again like that's I was I did this really fast and so that's this is not a commentary on CRC's questions at all but you know understanding the role of ZBA when they answer that question do you feel that they are demonstrating that they can explain the differences between their what they would do on ZBA versus what they would do on planning board and do you feel that that is a really high grasp of it or do you feel like there's a lot of room for growth there and they would need support so again what this does is it's not necessarily giving you a right or wrong answer it's giving you a way to frame the conversation and and come from the same place so we had talked about this a lot last time and I want to reiterate this is not going to be a perfect process in a in a process that's political by nature and so what this does is I think it gives us a common ground and at least allows us kind of to just own where we are being political and and that's okay right that's it's our job to be political but it at least gets us the things that are common ground we can find common ground on using a matrix so hopefully it starts the conversation and yeah and then the you know just to kind of again remind ourselves of the equity lens in this process what this also does is it allow it encourages you to consider indirect experience as relevant and it encourages you to consider that as part of the process it also ensures that we are all looking at the questions using that same sort of has direct relevant and life experience or you know demonstrates total total understanding or you know gives you those the same sort of ways of considering someone yeah thank you Anna and Athena could you just scroll back to see I just want to see what's on the other side of this okay great so this go ahead sorry I see that Jennifer's hand was raised Jennifer um yeah so I think you know also I know we haven't decided we're gonna use this you know we haven't made any decisions but we're also going to have to look at the questions we ask and see if right because I think like experience collaborating different different groups across differences is great I don't know that our questions always get to that oh that was pulled I think that was pulled from your questions I believe so it was something there was a question about can you tell us about experiences you've had collaborative collaborating or something like that but um agree different yeah like I don't know that some of the the questions like we've asked in CRC yeah we'd get just to be clear on yeah we'd get to would allow us to really be able to so then okay so there's a difference between the questions you asked and your evaluation criteria right and so I think that that's something to consider too is I pulled these from the questions without necessarily feeling fully like I had a grasp on what the criteria would be but that would be a question that um whether it's CRC or GL depending on what you're interviewing for um would be would be part of this and hopefully that's a good starting point for generating questions too just as a good practice right interviewing as well is sort of what are we looking for and then what questions get there and the what are we looking for would be what goes in the matrix okay so I'm just gonna not be around the bush so so what so I just I think a challenge we have is we're not we're looking for representation from the community in many different you know according to many different criteria including your positions on the issues and the concerns you represent or the concerns that are important you know so that we don't have like a planning board that's kind of all of one tends to view development in one way and then the other half of the community that's a different just isn't represented there and how does that fit into how we evaluate so we're not saying I disagree with this person therefore I don't want them although that can't help but play into it and if you have two candidates one's your position one isn't two candidates for one spot you know you might vote for the person that shares your opinion but if there's one if there's if there's a lot if there's a lot of vacancies I guess that's just that's my concern I mean how does the matrix help you get to a diversity of points of view on a governing body sure so I'm gonna this is off the top of my head but my thought would be that if you have one of these columns saying you know what what elements does this person bring to the table that would diversify our current zba that you could be as specific as where they live the identities they hold things like that you also could and I I think that it might be relevant to have this be a separate column possibly because I think that those are two those are two different things but I think you could say you know does this person bring a viewpoint that see what's hard Jennifer is is how do you how do you establish what the current viewpoint of a board is right unless you're doing a litmus test and asking everyone on board what they currently think it's really hard to know what you're benchmarking against so so you know I think that there's a challenge there in terms of what you're looking for and at what point does objectivity matter or not matter right okay so we've had a situation where you could question objectivity I mean to be we always have that though right that's what I'm saying but how do you right right so but but the matrix I guess I got that the matrix was that's what's hard isn't the matrix trying to address that situation that's what I'm saying so it in Anna would you pause just for people so we're always going to be looking at this so that's Anika okay so I just wanted to say like another point I think you know people can you know zero in on these type of matrices and yes you have to be careful but I think that they you know on a positive note they can kind of lead us away from and Jennifer I get what you're saying you're saying you know one half of the community and the other half but you know this leaves me back to kind of this overall exception in in Amherst that you have like A and B and that's it and you know I know that you know when you take the part of the community that might that pays attention to local government and the issues and comes to our meetings that's the case but we're also missing out on a huge number of people that aren't A and B thinkers you know they might be middle ground and pushing you know some way and I think this kind of A and B mentality or perceived mentality does turn a lot of people off from wanting to be involved with our committee so I think just anything that opens the door for variety for true diversity you know because I think that we have many committees that you know when you really look at what is true diversity you have diversity within diversity I mean we're lacking so I mean I'm supportive of of anything that can help us you know open the doors in that regard to encourage more people to be involved so we're not constantly like figuring out do we have a balance of the A and B one side or the other on the committee and have more of a true representation of our community as it actually stands outside of the people though I appreciate them all very much that come and attend meetings and really follow local no I agree but we're trying to I guess sort of have it that we we make it a little more objective and not who we personally like and I'm just you know want to make sure this helps get us to that so I think my response then Jennifer would be that I don't know that we should be asking the question of do they have views that I want to see right if we're looking to make this more objective and we're looking at boards like planning board and ZBA that are that are following written regulations then you know what questions we ask should be are they able to follow those regulations and and promulgate those regulations so I think that this does go I agree with that but what when that doesn't happen so so but this is where that matrix can help right so that when we're looking at this if you if you're looking at these the sample questions that I threw out there it wasn't you know do I like what this person says it isn't does this person believe in x y z that I also believe in and this is where I get to that point of this helps us get closer but we are a political body and ultimately that political lens might come in I think what's also interesting is to look at which which appointments the council retained in which the town manager does and when the town manager does appointments you know that it is I would love to see him using a matrix as well however it's a much more objective process I think because he is not a political entity and so it's interesting to me to consider when and how that political lens can come in and I think that my personal opinion is that we have foregone all of these other really maybe not fully but we have forgotten many of the very important elements of appointments in favor of that political stance and so bringing back something that grounds us in objectivity like a matrix will help because you also can't throw away all of the other things that are on this matrix if you do have that political discussion that's one element of all of these things that all really matter so I agree with that that's what I would like to get to yeah Pat yeah I I'm struggling not just now but over many meetings from you said when that doesn't happen meaning when when when it's not looked at objectively is that because if I say that when the person I wanted didn't get it or I'm not heard because I didn't get what I want and I really think a matrix can help us look at a range of things and believe it or not because I'm sure you probably don't about me but what I'm always looking for is somebody who can collaborate across differences and I that is critically important to me but but somehow rather as a community and as individual members of the council we've got to stop deciding that we didn't get heard or because we don't get exactly what we want and I think it's it's a it's a disease that infiltrates this community and you know finding a way to insulate or wear a mask against that would be very helpful a vaccine would be even better so I just have trouble with that statement it's a privilege to kind of do it to feel that way you know yeah I just want to say so one is on the CRC I voted for two people that I two candidates that I actually don't agree with very much but they were totally qualified and you know there were more so yeah so I'm not looking to get um you know I don't it's not that I don't feel heard if I don't get what I want I just think that yes sometimes we need to support people because they meet all these kind of criteria even if we don't share their point of view that's what I'm saying and I totally agree I would also just add and argue a little bit um that I don't think that as a community we are hearing each other well yeah there are degrees see that's the disease uh if we were listening and hearing each other more I think that we would have a lot more abundance to work with than what we have right now which feels very limited Anika yeah I just want to say my you know um I'm not sure if they receive that way my comments are not to you Jennifer or anyone here just in general um about the community and something that you know what I hear all the time and I think that you know we um you know there's a large um there's a large population that is you know actually you know viewing look you know our discussions and in ours meaning you know local government and town council as Jerry you know kind of A and B and that is in fact a turnoff for a lot of people um because it's seen as you know diversity is at one side or the other and a lot of assumption about you so you know my point was just that you know we you know it is pretty you know fancy kind of fancy and privilege I think that you know you can set up a committee just based on you know kind of choose very distinct and distinct and passionate points of views and see who gets the most votes you know um you know as opposed to having you know folks that are coming from you know very different places with just different perspectives and overall views and ways of you know you need to have some bridges in between um I think you know the the committees as well and I think that we are lacking in a major way in that department okay so I'm just going to pause us because I have to leave at 10 30 today and so just want to check in with the committee here um I do want to get the minutes that we have approved um if we can go ahead and and do that quickly Anna if you please feel free to jump you all so much thank you appreciate you thank you a lot all right so we are um we have the September 28th meeting minutes to adopt um has everyone had a chance to look at those okay so I'm going to move to adopt the September 28th 2022 meeting minutes is there a second second okay Anika seconds and any further discussion all right I'll start with you Pat I I'm an I Anika I Jennifer I okay great um so I wanted to quickly review what I have down for our next meeting and see if there are any any any input about that at this point um and it was a bit of a challenge because Mandy really um particularly the CAF and the regulations that Mandy had proposed looking at she wasn't able to be here to do that she did for sure say she wanted the CAF to be when she was here and I think would like the other piece that's on the agenda today to also be part of that discussion so um what I had on my agenda here for our next meeting was it was going to be our first discussion of the town manager goals that was something that we talked about several weeks ago I think Lynn might even be joining us for that I have to check in with her um and then as I said earlier I received a pretty lengthy review back from KP law on the firearms bylaw that we talked about several weeks ago so I received that yesterday wasn't in time to get it on to the agenda for today obviously but it will be on the agenda next week and you know what I'm just going to go ahead and say right now I'm today going to set up the packet and share point for our next meeting and whatever I have right now and anything that needs to be duplicated from uh today's meeting I'll just dump in there now um and so at least we'll be able to look at it internally sooner um of course yeah and including that firearms um piece which I think was it was really interesting um and then I also have that we would do a mock trial of the matrix I don't know if this group feels we're ready for that maybe that would be the easiest way to sort of jump in and decide on questions and stuff Anna agreed to be the model for that so Pat last week you weren't here we talked about doing um like a mock trial of the matrix with a person so that we could actually go through and as if we were interviewing them and each use the matrix um and then be able to have a discussion based on that um to sort of pull out where there were issues where things worked where they didn't um and then the CAF and the um the rules that are on today's agenda so that's a pretty big agenda for next week and of course the water bylaw if we get that back as well I do believe the CAF and the the um rules are not urgent so I'll talk with Mandy about that um Jennifer yeah you I know you don't have time now but um you're the liaison to the board of health right and did they have KP law come to discuss firearms not yet um their last meeting which I attended they started the conversation um and I actually brought to the attention of both Paul and Lynn that they were also having a conversation um and so that maybe we want to see how you can do a joint yeah exactly yeah so that thank you for reminding me because they have a meeting actually tomorrow so I think it would be good for them with Paul's permission um to share that KP law thing with them um as well so I'll talk I'll ask Paul about that any other questions or comments okay um so do we feel good ending the meeting now is that okay and then we'll take everything okay all right can we do it I'm sorry um can we do a quick there's no public attending so we don't have public comment thank you just was going to do that yes absolutely so just looking at attendees um we do not have anyone in the attendees um so public comment has been called and there is nobody here um and if there aren't any other questions or comments or concerns then I will adjourn the meeting at 10 29 no complaints okay all right thank you thank you okay bye bye so Athena are you and I staying on oh that's right yes um let me let me just a second here to stop recording


We're now going to hear from Amy McGuire from the Baylor College of Medicine. Amy is going to be talking about ethical, legal, and social issues in genomics reflecting back and planning ahead. And thank you very much for inviting me to be here today. It's really exciting to be part of this celebratory event, and I'm very happy to be here. So I was asked today to talk about the ethical, legal, and social issues in genomics. And study of the ethical, legal, and social implications of genomics in the Human Genome Project has really been tightly integrated with the entire NHGRI and the Human Genome Project since its inception. And so the ELSI program in the Division of Extramural Research at NHGRI was established in 1990, and it has always been structured as with a multidisciplinary focus. Its original function and purpose was to identify and examine key ethical, legal, and social issues associated with mapping the human genome, to stimulate public discussion about the Human Genome Project, to develop policy options, and to expand public education. And as the NHGRI has moved beyond the Human Genome Project, so has the ELSI program, and so it is still dedicated to these four kind of missions, but now related to the broader issues in genomics. The ELSI program at NHGRI has organized their funding of extramural research around four general topical areas. The first is privacy and confidentiality and the fair use of genetic information, including genetic discrimination. The clinical integration and impact of genetic testing. Issues related to genetic research, including things like research design, and issues around informed consent and human subjects research protection. And education and the development of resources to stimulate public education around genetics and the ethical, legal, and social issues associated with genomics. And so there has been a tremendous amount of success within the ELSI program and the research that's been funded by the ELSI program and all four of these areas of research over the years. And many of my colleagues who have sort of set the groundwork for the research that we're doing today have been successful at engaging with the scientific community and conducting research that's been useful and impactful on science practice and policy. And I'm not going to really go into any great detail about sort of the projects that have come before us, but I want to point out that one of the most, I think, impactful things that the ELSI program has done is really to sort of lay out a new area of research. And ELSI's really come to represent and it's kind of a representation of a broader area of research that deals with ethical, legal, and social issues in science more generally that takes a multidisciplinary approach. And so this has been accepted at an international level and I think that the importance of studying these issues in all areas of science has really gained a lot of traction and I think that can be really traced back to the beginning of the ELSI program at NHGRI and NHGRI's dedication to looking at those issues in the context of the Human Genome Project. So I'm going to talk about this broader ELSI research area when I talk about how we can plan for the future and some of the things that we might be thinking about in conducting the research as we move forward in plotting our course over the next 10 years. So if we look at the strategic plan that we've been looking at all day, there's a text box that's dedicated to identifying some of the salient and critical ethical, legal, and social issues that are going to be implicated over the next decade and these are organized into four major categories, ethical, legal, and social issues related to genomics research. Things like human subjects research protections, ensuring that we have diversity in our cohorts and our research cohorts, making sure that we have effective community engagement and getting the community involved in our research project. There are a lot of issues in the area of genomic medicine as we see this translation into genomic medicine. I think some of the most important ones are making sure that we are effectively communicating with patients about the uncertainty and evolving nature of predictions based on genetic information and also effectively evaluating the effectiveness of genomic services as they get integrated into clinical care. There are legal and policy issues that I am particularly interested in and I think the strategic plan really highlights three of the most important ones which are issues around intellectual property, issues around insurance reimbursement for genomic services, and issues around the regulation of genetic tests. And finally there are broader societal issues that are largely conceptual in nature that have to do with implications of how genomic knowledge changes how we think about human health and disease, how we think about self-identity, how we think about things like free will and individual responsibility. So all four of these areas are extremely important and there is very good research going on in each of these areas. And what I am going to do today is not talk specifically about the research topics themselves, but rather to try to identify a couple of major themes that can help shape the ways in which we do the research that can make it most impactful as we move forward in the area of genomics. And so in 2008 there was an assessment panel that looked at the LC program at NHGRI and they published a report and kind of strewn throughout that report are three major themes that I think come up for charting the course for the future of LC research more broadly. I think these three themes are also integrated in some ways into the strategic plan that was published yesterday as we look forward to how this area of research will progress. So I'm going to talk about each of these three integration, collaboration and expansion and I'm going to use my own experience and my own research to try to illuminate each of these domains or each of these themes. So it's a rather narrow lens through which we'll be looking at these themes. I'm going to recognize that there's a lot of research going on that can help inform how we think about these three domains. But I want to use my experience to try to show you my perspective on how these things have come into play in my research. So with integration, here I think that the main idea is that there's been a tension in sort of LC research since its beginning between LC researchers being responsive to the issues that are coming up for scientists as they're coming up and helping them to manage those issues in real time versus LC researchers trying to identify the larger, broader issues that might be implicated in different areas of genomics and to study those broader issues, slightly detached from the research that's going on at the time. And I think that this tension is very healthy and both kinds of research are very important for the LC field to advance effectively. But my personal research has been more focused on the first model. I've been very informed in the kind of research that I do by the scientists that are doing the research and the issues that are coming up for them in real time. And this is just one example of several that I could tell you about. So in 2007, Jim Watson was up here earlier and was telling you about getting his personal genome sequenced. He mentioned that his sequence was done by 4.5.4 Life Sciences and it was analyzed at Baylor College of Medicine. And I can say that since, in that project, the scientists both at 4.5.4 Life Sciences and Baylor College of Medicine were very conscious and conscientious about the ethical, legal, and social issues that were going to come up in the context of that project and the broader implications that that project would have for sort of how we integrate whole genome sequencing into our research practice and clinical care. And so as soon as Baylor College of Medicine got involved in this project, I was brought on board by our Genome Sequencing Center and Richard Gibbs and was intimately involved in the entire project. I went to all of the scientific meetings and participated in the planning of the project, helped them identify the ethical, legal, and social issues that were coming up and to manage those the best that we could. And even participated as we started to disseminate the results of the project through different press releases and publications. And you can see here we had a paper in Nature that was a letter, that was a four-page letter, kind of describing our results. An entire page of that was dedicated to identifying the ethical, legal, and social issues were in the project and providing a justification for our management plan in the context of this particular project. So I think that's a good illustration of how we had a very close integration between the science and the LC research and how they both sort of served to foster the other and it really resulted in, I would say, better research on both sides. This project got me really interested in some of the issues that I worked with some of my colleagues in the LC community, Tim Caulfield and Mildred Cho, and we thought about the issues that had come up in the context of this research and thought more broadly about the policy implications of that when you have research participants who aren't Jim Watson, because, frankly, some of the ways in which we managed the project were specific to the fact that we had a very unique individual before us who was the research participant. And so we thought about these issues a bit more broadly and wrote about them and put out some preliminary recommendations for managing them and research with other research participants' involvement. And this also led to an international consensus working group where we got a bunch of people together and we talked about these issues and we went back and forth and we looked at some analysis and looked at data and we came up with a more solidified set of recommendations that was published in PLOS Biology. This project also got me and a couple of my colleagues really thinking for the first time about how are we going to manage, what are going to be some of the ethical, legal and social implications as we start to integrate this technology, this whole genome sequencing into clinical care. And so we thought about those issues and wrote about them kind of trying to tease out what would be the health system challenges and implications of routine integration of whole genome sequencing and that's work that I continue to think about and continue to work on. So that's an example of how we... one example of how LC research and the genome science has kind of integrated itself in a way that I think was fairly successful and again, there are other models that are out there as well. The second theme that I want to talk about is collaboration. This...from the LC research perspective, I think we are and should be interested in ethics and legal and social issues associated with this research. And to me, I really feel strongly that if you don't combine sort of a multidisciplinary approach and consider all of these various facets of a given topic, then you won't have a clear picture of what you're thinking about. So let me give you an example of this. I've been in some research around direct-to-consumer genetic testing. So when some of these companies like 23andMe, which you can see the 23andMe spit kit here, which was named Invention of the Year a couple of years ago, when these technologies first came out and these companies first started advertising their services, I think it was in 2007, I became very interested from a variety of different perspectives. And early on in sort of the life of these companies, there was some pushback by a couple states, New York and California. They sent letters to a couple of the companies and they raised questions about whether providing these services was somehow in violation of their state laws and one of the laws that they were particularly interested in was the law that most states have that prohibits the unlicensed practice of medicine. And so from a legal perspective, I was very interested in whether this type of service constitutes the unlicensed practice of medicine according to state laws. And so I partnered with a legal colleague of mine, Cindy Marietta, and we did an analysis of state laws on the unlicensed practice of medicine. And what we found was that there is really not very good, clear guidance, which sometimes you do find. And that most states do have laws that prohibit the unlicensed practice of medicine, but whether this is the practice of medicine really turns on whether you consider giving somebody predictive genetic information to be a diagnosis. And there's not very clear guidance, there's a lot of opinions, but not very clear guidance on whether that is diagnostic. So it occurred to me that how consumers perceive this information may become very relevant from a legal perspective of whether it's diagnostic information. So if the consumers are perceiving it to be diagnostic information, that could become relevant in a court of law if this ever gets challenged. And so we decided to look at this from an empirical perspective, and we did a very, very pilot study. It was a cheap, unfunded, quick study to kind of get our finger on the pulse of what people thought about this and a couple of the other issues associated with this emerging industry. We've hosted an American Journal of Bioethics, and what we did was an online survey and we used Facebook.com users, and this was done in 2008. And the reason we chose Facebook.com users is because some of these companies engage in social networking, and we thought that perhaps users of Facebook.com may be some of the early adapters of these companies. So we surveyed just over about a thousand individuals, and you can see their demographics up here. And we first asked them, have you ever used these services, and if not would you consider using the services? And about 6% of our respondents reported that they had used the services, and 64% said they would use the services even though they hadn't done so. Then we asked them, why would you use the services? And over 80%, they could choose more than one answer here. Over 80% said they just had general curiosity about these genetic testing services. More interesting to me was that over 70%, about 73, 74%, said that they would use these services specifically to see if a disease ran in their family or was genetic. So they were interested in it for healthcare purposes. And also very interestingly, about 40% said they would use the services to learn about their genetic makeup specifically without having to go through a doctor. And we didn't get to kind of follow up on that and probe into why that was so important to such a large minority of our respondents, but I think that's an important issue that deserves further exploration. So we asked them a bunch of questions and relevant to what we're talking about right now, we asked them whether they considered the information you would get back from these companies to be a medical diagnosis. And of that small 6% of our respondents who said that they had used these services, 60% considered the information they got back to be a medical diagnosis. Of the 64% of individuals who were interested in using these services, just under 40% said they would consider the information that they would get back to be a medical diagnosis. Finally, we were interested in sort of how is this information from a policy perspective going to interact with our healthcare system and the practice of medicine. And so we asked individuals that had used the services, did you talk to your physician about your results? And about 55% said yes, they had spoken to their physicians about their results and another 10% said they hadn't that they planned to. But remember, this is only 6% of our respondents, so it's a very small number of people. Those who said they were interested in the services, just under 80% said they would talk to their physician about their results. And then we asked everybody, do you think that physicians have a professional obligation to help individuals understand results from these direct-to-consumer companies? And about 60% said agreed or strongly agreed with that statement, that yes, physicians have a professional obligation to help patients understand this information. So just as a point here, there was a follow-up, much more rigorous study that was recently conducted out of Eric Topol's lab. Cinnamon Bloss published a New England Journal of Medicine I think just this month. And they did a much more intensive survey and study with over 2,000 Navigenics consumers. And what they report in their findings was that 26.5% of their respondents reported that they had shared their results with physicians. So it may be that people think they're going to share their results with their physicians and they're not actually doing it. I think we need a little bit more data to understand that and piece that out. Regardless, however, this research and the results of our survey raised for me a lot of questions about sort of the healthcare ethics and implications of this. So I was really interested in, well, what are physicians supposed to do when patients come to them with this information and how is it going to interfere with or enhance the physician-patient relationship and what are the obligations of healthcare providers? And so I partnered with a colleague of mine, Wiley Burke, and we started thinking through these issues from an ethical perspective and wrote an article where we were kind of teasing out the appropriateness of acting on some of this information. And I think one of our main points there was when you have genetic information that you get back that has uncertain or unproven clinical utility, there may be a tendency to want to try to follow up on it because that's what, as healthcare providers, we typically do, is try to follow up on stuff and find out the answer. And if it's truly the science is not there, then we make the argument that to follow up on it might not be a justified use of healthcare resources and it could also pose additional risks and create iatrogenic harms for patients. So coming off of sort of that ethical analysis and the discussion that we had had, it brought us back to sort of the legal issues and we became interested in the regulatory issues of should these companies be regulated more than they are currently being regulated? And this issue really kind of came to a head last summer when FDA announced its intention to start regulating direct-to-consumer genetic testing companies and genetic testing labs more generally. And so in the last couple of months we partnered, Wiley and I partnered with some lawyer colleagues of Barbara Evans and Tim Caulfield again and we really did sort of a more in-depth legal analysis of how the FDA possibly could regulate this versioning industry with all the complexities of the genome-wide type of testing that they're doing. So hopefully that gives you a sense of sort of how the legal analysis that we initially did informed kind of the empirical questions that were raised and then our empirical study informed our ethical analysis which raised additional legal questions. I think now we're at the point where there are additional empirical questions that we'd like to study and I've started collaborating with Robert Green and Scott Roberts who've done some really, really fascinating work on outcomes measures and how patients react to certain genetic risk information to look at it in the context of direct-to-consumer testing. They have a big grant and I'm consulting on that grant and they're doing some really neat work in that area. Okay, the last theme that I kind of wanted to talk about is the expansion theme and here I think I've already sort of brought this up in some ways. The fact that ELSI research in general has really outgrown its place solely within the context of NHGRI and it's a much broader area of research now. It's also in some ways outgrown its exclusive emphasis on genomics. I think there's a lot of other diseases and conditions that are touched by this. I would argue that all areas of medicine and research have ethical, legal, and social implications that deserve serious consideration and study. And so I think that in some areas of research and medicine there are unique ethical, legal, and social implications and it's also the case that some of the issues that we study in the context of genomics have direct impact on researchers, investigators, and other areas of health and disease and that are funded by other institutes at the NIH. So one example of this has to do with data sharing and I've spent quite a bit of my time working on the issue of data sharing and as you all probably know NHGRI has had a very liberal culture and policy around data sharing since the beginning of the Human Genome Project. They have called for the rapid public release of all generated sequence data since the beginning of the Human Genome Project and there have been several data sharing policies and published in that spirit. In the last couple of years I think there's been increasing concern about the ethical implications of public data release and concerns coming out of some of the informatics research that's been done showing just how easy it is to identify an individual on the basis of their genomic information. There's been concerns about whether these types of policies appropriately strike the right balance between advancing research and protecting individual research participants and their privacy. And so the latest NIH policy on data sharing which was for genome-wide association studies calls for the release of all GWAS data into dbGaP which is a controlled access database and you have to apply for access to dbGaP through a data access committee so this creates an extra layer of protection. So you'll notice that this is an NIH-wide policy. It's not restricted to NHGRI and there are a lot of investigators at NHGRI who are conducting research that would make them fall under this data sharing policy. And at some institutes I think there are special issues that come up that complicate the issue of data sharing and just one example of probably many is the National Institutes on Drug Abuse and they held a workshop a couple years ago that I attended. And the sole purpose of this workshop was to think through some of the ethical challenges associated with data sharing when you're dealing with sensitive information like in a social environment and psychosocial information and you're merging that with genetic data. And so this gives you a sense of sort of how the issue of data sharing really touches a lot of different institutes and a lot of different researchers. I got engaged in the issues around data sharing again through collaboration with our genome center. This is actually how I got interested in the whole field of genomics and the whole foundation for the genome center where they were really concerned about releasing their individual level participant data into publicly accessible databases and this was about in 2005, so about two years after the genome project finished. And so Richard Gibbs and I worked on this quite a bit and I went to all of their lab meetings and spent a lot of time over at the genome center trying to understand the issues from their perspective and then went back to my office in the Center for Medical Ethics and did a lot of legal research and did a lot of ethics research and spoke to a lot of colleagues and tried to get a handle on what some of the issues were. And we published this paper back in 2006 and made several recommendations for managing the issue of data sharing. One of our recommendations was that since the decision about data sharing necessarily involved a tradeoff between individual privacy and advancing research that people are going to differ in terms of how much they care about their genetic privacy and so we should leave that decision up to individuals in the consent process. One of the biggest policy pushbacks we got on this was, well if you tell people about data sharing and you ask their permission and you give them a control over it nobody's going to participate in research and nobody's going to share their data publicly only what Zach Kohane and Russ Altman call information altruist, which are those people who have very little concern about their genetic privacy are going to be participating in public data sharing. So we decided to test this more empirically because it seemed like a legitimate concern but wanted to see what participants felt about this. And we started by doing some focus groups with individuals who were participating in a genetic epilepsy study at Baylor and from our focus groups it seemed that they were very interested in the issue about data sharing. They seemed to want to get engaged in the decisions about data sharing and we developed a couple of consent models that we ran by them and got their feedback on and modified in response to a randomized trial of three different types of consent that dealt with data sharing and really the only thing you need to know about this for these purposes is that each of the consents only varied in terms of how much control they gave participants about data sharing. So the traditional consent here just simply said we will share your data both in publicly accessible databases and controlled access databases binary consent gave them an opt out so you could participate in a study and you could choose not to share your data as you liked and tiered consent gave them three choices you could participate you could share your data publicly you could only share your data in controlled access databases or you could not share your data at all. We then debriefed participants we showed them all the consent options allowed them to change their mind and invited them to participate in a follow-up interview. We partnered with these six studies at Baylor that were ongoing and were recruiting participants and you can see about half of them in an autism study and we worked very closely with these investigators all of these studies were collecting samples and they were potentially using them for genetic analysis and they would involve broad data sharing. We randomized 323 individuals and surveyed about 230 and are just very briefly our main findings was that initially this is pre-published data but initially about 84% of people agreed to public data release regardless of what consent form they had been given and everybody who had been randomized to the traditional consent where they didn't have an option agreed to participate in the study so nobody said I'm not participating in this because you're telling me you're going to release my data. After we showed them all their options about 53% stayed with their decision to release their data into publicly accessible databases about a third chose only to release them into restricted databases and about 14% chose not to release them at all. Other key findings that we found through our interview process and this is sort of just the summary of some of the findings that we found more qualitatively people seemed very willing to share not only their genetic information but also their clinical data but they seemed to draw a line at personal information and this is defined as name social security number address things like that. There was also a tremendous amount of trust in researchers and in the research institution and I think this contributed to people's willingness to participate in the research to share their data more publicly and finally we asked participants do you want to be involved in the decision about data sharing and the vast majority said yes when we asked them how do you want to be involved overwhelmingly we heard just ask me about it I just want to know about it and I want to be asked about it and when we kind of probed that more qualitatively we found that this really wasn't about primarily about concerns about their privacy it was about respect it was about feeling respected as a research participant and feeling like they were being treated respectfully so I'm presenting all of this to you really to kind of make the point that this type of research has implications I think for all areas of research funded by all NIH institutes not just genome research there's a lot you know we had cancer researchers funded by NCI we had neurologic researchers funded by other institutions and so this has implications for all of them so I'm going to move forward in their research so I'll just bring us back to our three themes and just to highlight these again and I just want to reiterate one more time that I'm presenting you with my experience and my sort of narrow lens at which I'm looking at these three themes I do think they're important themes and I hope that this can contribute to a discussion about the best ways that we can integrate, collaborate and expand so that LC research has the greatest impact on science as we move forward in the next decade and I said I'm a multidisciplinary researcher so this is a multidisciplinary team of investigators that I'd like to acknowledge thank you