Return-Path: <nifl-ld@literacy.nifl.gov> Received: from literacy (localhost [127.0.0.1]) by literacy.nifl.gov (8.10.2/8.10.2) with SMTP id j2DGc5C06910; Sun, 13 Mar 2005 11:38:05 -0500 (EST) Date: Sun, 13 Mar 2005 11:38:05 -0500 (EST) Message-Id: <200503131632.j2DGWoC06710@literacy.nifl.gov> Errors-To: listowner@literacy.nifl.gov Reply-To: nifl-ld@literacy.nifl.gov Originator: nifl-ld@literacy.nifl.gov Sender: nifl-ld@literacy.nifl.gov Precedence: bulk From: "Glenn Young" <gyoungxlt@comcast.net> To: Multiple recipients of list <nifl-ld@literacy.nifl.gov> Subject: [NIFL-LD:4643] RE: Spanish Screen - request for help X-Listprocessor-Version: 6.0c -- ListProcessor by Anastasios Kotsikonas X-Mailer: Microsoft Office Outlook, Build 11.0.5510 Content-Transfer-Encoding: 7bit Content-Type: text/plain; Status: O Content-Length: 7604 Lines: 198 OK ... Thanks Mary ... If that is what is needed ... Then I agree .. Glenn Young 505 East Braddock Rd # 608 Alexandria VA 22314 703-684-1750 gyoungxlt@comcast.net -----Original Message----- From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Mary S. Kelly Sent: Friday, March 11, 2005 2:07 PM To: Multiple recipients of list Subject: [NIFL-LD:4633] RE: Spanish Screen - request for help I have been reading postings on this list serve for years now, but haven't written in before. I feel compelled now given the discussion of a Spanish LD screen. This is a laudable, sorely needed effort. However, I agree completely with Nancie Payne that any time human beings are asked to participate in research - or data collection, or whatever name you want to give it - ethically it has to include informed consent. There are many agencies, mine included, that could be fined by the Federal government for doing research without informed consent, no matter how benign the research is. There is no reason not to tell people the exact purpose of the screen. If explained clearly, they will understand it is a needs assessment and not a promise of services. With informed consent, they can decide not to participate if they have concerns about the lack of follow up services. If you want numbers without the bother of informed consent, send questionnaires to program managers who can estimate their needs. Mary S. Kelly, PhD Director, Adult Literacy Program Fisher Landau Center for the Treatment of LD Albert Einstein College of Medicine Bronx, NY At 08:55 AM 03/11/2005 -0500, you wrote: >To Nancie and Varshna > >Prehaps research project is the wrong term ... And prehaps it is .. >Maybe you can help > >So the question is simple ... > > How many people given the screen scored "at-risk" > > Be delivered on the front line by Spanish Speaking persons > > Report would be in gross numbers -- x number of screens given ... Y >number of people scored "at" risk .. > >No other demographic or such break down ... Just trying to get some >gross numbers to start ... So we can draw attention more to the issue. > >We would run the numbers through LDA of Western New York ... And to >SUNY > >I am fully aware that there is limited resources to follow-up (both >money and professionals) ... That is the problem I am trying to address >with the "research" .. And so if we can't follow-up with good >diagnostics ... I don't want to set up either the programs or consumers >with expectations they can not fulfill ... > >That is why I am suggesting that the screen be used to try and simple >see how many "score " "at risk" ... > >So perhaps this is just "data collection" rather then "research project" .. > > >I am not trying to get around "human research protocols ... But I we >don't want to put programs or people at risk for things we can not >deliver ... But we need to know what is going on .. So it a "chicken and egg" issue? > >Suggestions? thanks > >Glenn Young >505 East Braddock Rd # 608 >Alexandria VA 22314 >703-684-1750 >gyoungxlt@comcast.net > > >-----Original Message----- >From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Varshna >Narumanchi-Jackson >Sent: Thursday, March 10, 2005 7:15 PM >To: Multiple recipients of list >Subject: [NIFL-LD:4626] RE: Spanish Screen - request for help > >Nancie and Glenn, > >Thanks for the follow-up and feedback. Glenn, could you please be more >specific about the parameters of your research project? > >What are the research questions you are testing? What protocols would >you suggest programs follow? How would you want the data reported? >Who gets the data, and how would it be analyzed? How many would >constitute a sufficient sample size? Would the results be published... > >Sorry to be obnoxious, but I think more information at the front end >would offer programs a better opportunity to evaluate the benefits of >participation. Texas has a sizable and politically active >Spanish-speaking population, so it will be necessary to weight the >benefits against the risks of engaging participants without informed >consent and without backing from a major research institution. > >Thanks, Varshna. > >on 3/10/05 5:18 PM, Nancie Payne at napayne@worldnet.att.net wrote: > > > Hi Glenn and all reading this message, > > > > Unless I read the information incorrectly I believe you must inform > > the participants in a research project that they are being involved > > in a research project and the type of project -- I believe it's > > called "Informed Consent" and it is part of the required protocols > > under the code of ethics and right to privacy process when involving human subjects. > > > > -----Original Message----- > > From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of Glenn > > Young > > Sent: Thursday, March 10, 2005 10:07 AM > > To: Multiple recipients of list > > Subject: [NIFL-LD:4621] RE: Spanish Screen - request for help > > > > Thanks for the question ... > > > > Since this would be anonymous ... There would be no issue for the > > program as far as follow up ... Research such as this, is often > > conducted with no implied follow-up or the participants ... Since > > the participants would not know what this is about ... There should > > be no confusion ... They can be told that this is just a survey > > being conducted on past education and other history ... For data collection ... > > > > I think there should be NO statement in anyway to the participants > > that this is a screen for learning disabilities or anything of the > > sort ... Since many of them will not know what LD is, and this > > would cause confusion, and also many may have a negative connotation > > of the term "disability" which could get a lot of false negatives ... > > > > Also .. If we told them it was a LD screen, then, your right, they > > would expect some kind of follow up ... Or want to know the results > > ... So that is why, for this purpose ... Getting some "gross" > > numbers, we need to keep it simple, and anonymous and with out > > participants knowing >what it is ... > > > > > > I hope this answers the question .. > > > > Glenn Young > > 505 East Braddock Rd # 608 > > Alexandria VA 22314 > > 703-684-1750 > > gyoungxlt@comcast.net > > > > > > -----Original Message----- > > From: nifl-ld@nifl.gov [mailto:nifl-ld@nifl.gov] On Behalf Of > > Varshna Narumanchi-Jackson > > Sent: Wednesday, March 09, 2005 8:02 PM > > To: Multiple recipients of list > > Subject: [NIFL-LD:4619] RE: Spanish Screen - request for help > > > > Glenn, > > > > Aren't you worried that such screening without appropriate follow-up > > might be confusing or upsetting to participants? I would wonder why > > I am being asked a bunch of questions if nothing comes of it. If I > > were to recommend this idea to some program directors, what would be > > a safe response to the question? > > > > Sincerely, Varshna. > > > > > > on 3/9/05 10:34 AM, Glenn Young at gyoungxlt@comcast.net wrote: > > > >> The only thing that would be reported from the data > >> collected is that the screen was administer to X number of > >> persons, and that Y number of persons were found to have scores > >> based on the screening design that indicated there could be LD. > >> > >> > >> If there is actually a significant finding of those at risk for LD > >> through this screen, it may stimulate additional research in this > >> area. (And any report on the findings will be filled with caveats > >> on the > > whole issue.) > > > > > >
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