I was let in by Marty’s neighbor (my neighbor now) Nancy, who gave me advice about the neighborhood and invited me to an upcoming German opera production of Beauty and the Beast – Zemire und Azor. I explored the neighborhood and later when my house mate Ed returned home and I talked with him and we determined that we had more in common than we expected, so I am happy in my home.

Friday and Saturday I took the train into the city and walked around. It was a lot to take in. I walked though some parks and walked into some stores and tried to watch people in the different neighborhoods to see what they were doing. I looked for coffee and was really surprised that there seemed to be no coffeehouses anywhere.

On Saturday night I went to that opera. It was in the Liederkranz on East 87th on a small stage with an audience of about 40. The actors were so close and I had never appreciated what opera singing was before this. It made me realize that for every opera singer who performs professionally there are many equally talented singers who perform as amateurs and enthusiasts and who may or may not someday become professionals themselves. I do not have vocabulary to describe the show, but it had me entranced and I had never before heard voices do what they were doing with their voices.

I did not know it was a parent squirrel at first and she was scared of me, but then I saw that she was concerned about her baby. The little squirrel was furry and crying because he had been pecked twice (I think not hard, but it was about to get bad) and he had just fallen and was cold and it was raining. I stepped back and the mother quickly ran over, grabbed her baby, and carried him up the tree. The baby was quite large but she still was able to carry him. I think soon he will be a healthy young adolescent squirrel and able to take care of himself, but obviously he was having a bad day.

I am glad that I was there at the time I was. If I had not been there then maybe that crow would have carried him away and I wanted that baby to be safe.

I think that everyone in the room had been concerned with the problem of return of results for years and that no one knows what the solution is. Most people express the problem as a lack of ability to connect to the audience, and I certainly agree that this is true, but I think the bigger problem ultimately will be a lack of ability to communicate effectively once there is a communication channel established in the future. About the first problem of no communication channel – the reason this is a problem is because researchers typically are several degrees removed from the identities of the specimen donors. Specimens come from various sources including through recruitment in clinical trials, from personal physicians, from specialty physicians, through incidental tests, and from any other situation where a person might give a biological specimen in a place where someone also has time to say, “Can we use part of your specimen for research?” Often the donor has no relationship with the person receiving the donation, and the donation itself is not a memorable incident to the donor. At minimum the donation then changes custody into a biorepository, and from the biorepository to a researcher. There could be more links in the chain, but even in this ideal chain there are four parts – donor, local collector, biobank, and researcher. The local collector is perhaps the only agent who knows the donor’s identity and contact information, and since the local collector is often a small office, they do not have technological infrastructure to take on the logistical burden of receiving information from the biobank and relaying it to a participant. The biobank necessarily will have some identifying information about the patient, which may include some phenotypic data or it may be that they convert the biospecimen into biodata and they only share biodata for research. The researcher will have the least information, or at least no more information than what comes from the biobank. Researchers will generate some result, and the return of results would mean that they send the results to the biobank which is the primary steward and trustholder. The biobank would relay the message to the local collection center, who would get the message to the donor.

The solution to solving the message transfer part of the communication problem is probably an extra secure version of an online social network platform. It would need to be extra secure because since it contains personal health information there has to be greatly reduced risk of it being accessed by a non-authorized user. Mere online password login probably would not satisfy anyone for safety concerns.

But supposing the communication channel was in place. I hear a lot of researchers talking about how they want this channel, but I have a view that they would not know what to do if they had it because they are already making horrible communication decisions in the things which are totally under their control. There are already lots of times when study participants are available and do want information and nothing is available to satisfy them. What I want to see in clinical research is more effort into providing educational materials in layman’s terms, and I feel like this is hardly done. I also feel like if this were done it would be more satisfying in most cases than setting up the complicated communication channel which would be required for personal return of results, and anyway, a layman explanation of the research is prerequisite for a donor to be able to understand their personal results.

I do not fault anyone for the problems because technology advanced so quickly and we are just becoming conscious of the change. The simplest way that I can describe the issue is that a lot of people studied and worked in science for years, and now they are finding that in fact a significant amount of the work in their industry is within the domain of entertainment media production. Research participants demand explanations which are comprehensible and interesting to them and this has more to do with documentary journalism than anything else.

He said that until now Kelly Edwards and Malia Fullerton have managed the online aspect of his educational outreach needs and he has overseen the provision of paper brochures in the office or clinic setting. He emphasized that researchers doing research may recover costs in their work but that it is a non-profit effort and seemingly something which hardly sustains itself financially despite its huge benefit. He took a question from the audience – “What communication strategy works for research?” He said that he was sure that there are many areas in research where the communication is wholly insufficient and that he was looking for new ideas.

His problems are in my interests. He said more but what I just related is what stood out as content to which I wanted to reply. About the separation of paper brochures and online content – for many users now and for most users in the future all available paper content should be online and whatever information there is online ought to lead to as much non-personal, publicly published information as a person could want. I cannot predict the time scale of this, but a near eventuality which will happen in the next 20 years is that all information which can be made available in static media which is required to complete any popular university-level undergraduate course of study will be available for free online, as will many more educational resources. I predict that all health interventions or otherwise agreements will link off to external content at the lowest level, then a consumer can surf to whatever complexity of an explanation they want along to a rather thorough multi-year course of study on the topic if they so desire. Facing all this content will be summary explanations just as are common today, but the change will be that any topic in the summary will be expandable with deeper content, and the deeper content will itself be expandable to many layers. So brochures are not a perfectible end – they are tools to raise talking points or at least to teach a consumer that talking points may be raised should they choose to do so.

Those are big issues but are incidental to and follow the sorting of the extent to which science is non-commercial. I have serious concerns about the non-profit aspect of noncommercial, non-profit, charity institutions of all types and especially biotech research institutions. The seed of my concern is that biotech research has commercial application, and I think I am reasonable to fear that a non-profit institution can become a shell which acts at the behest of commercial interests, either intentionally or unintentionally. This really is not a big problem with good management, but what really bothers me is the computer culture absence in so many researchers. This is the netgen divide again – people who grew up with internet have a native fluency in some cultural concepts, and in certain circumstances people like me who have this fluency expect people to pay service to these ideas if they understand them. When we do not hear them, then either something is wrong or someone is clueless. I happen to know that most researchers outside of computer science are just unlearned about what we all went through.

I am not going to explain the so-called “intellectual property” training which the non-netgen past leaders had me take, but I will say that I feel that I and people like me have a solid intuitive understanding of the concepts of “free as in freedom”, open source, and what many entities call “intellectual property”. I know the difference between the GNU General Public License and the open source movement and Creative Commons licensing and the public domain, and I think that anyone who wants to talk about altruistic data or efforts had better well know the difference between all these and closed data. This training was put on me continually since I was young and had the ability to use the Internet to share all media, but particularly music, software, movies, and games. I know what content sharing is and when it happens and when it does not, and generally in science, this is a foreign concept.

So about that non-commercial aspect to the collection of biospecimens – I know the language of noncommercial sharing. There is a vocabulary for that which I have been using for most of my life. With which sort of license or movement do the noncommercial biotech research institutions most closely align? I feel like the reality is all of them like to talk about being altruistic and free and good for humanity, but almost none of them are willing to use any of the definitions of altruistic or free that have been beaten into me over the years. The language which researchers use is primitive because they just started learning to speak it and because of their perspective, they do not see what I perceive as a parallel with what they are doing and software or entertainment media.

I am highly supportive of science research but it almost always is a long way from being altruistic or noncommercial. A major concern with biodata of human specimens is identification, and this is a big concern, but the bigger concern to me is me donating my specimen only to have a selfish and traitorous private interest exploit it. I could take risks to my identification but am disgusted by risks to the theft of my contribution by private interests. I would love to see a GNU biodata license applied to all biospecimens, but barring that, some other license which is free and promotes freedom would be nice.

Here is a list of who is cool in Seattle biotech communications:
Mary Guiden, Seattle Children’s, public relations
Allison Rhodes, UW, surgical outcomes research
Raphael Alphonso-Cristancho, UW, surgical outcomes research
Nylkhalid “Bo” Jungmayer of NWABR
Sean Schmidt, science design and culture blogger
Brian Glanz of the Open Science Federation
Lynn Rose, Seattle Children’s biorepository
Craig Rubens
Marc Provence, UW public health
John Fogerty – patient advocate and public relations for big media
Irish Malig biotech communicator
Cyan James, grad student in UW program for public health genetics
Lara Mangravite of Sage Bionetworks
Marc Haertle
Kathy
Peggy Porter, biospecimen collection at Fred Hutchinson Cancer Research Center
Jon Izant of Sage Bionetworks
Christine Suver of Sage
Marilyn Hair
Jenn Wroblewski, public engagement at NWABR
Nick Anderson
Peter Tarczy-Hornoch pediatrician and bioinformatics
Malia Fullerton bioethics and population genetics at UW
Barbara Stein, director of the Consortium Biospecimen Resource
James Riddle, IRB at Fred Hutchinson Cancer Research Center
Susan Adler of NWABR
Jason Malone of the Institute of Translational Health Sciences
Victoria Chinnell of the Seattle HVTU Community Advisory Board
Joyce Minor, patient advocate
John Paul Europa, nurse and researcher at Northwest Kidney Center
Sarah Alexander now of GAPPS and formerly of HVTN
Therese Beale of Beale Communication
me

I am going to review some of what was discussed in some upcoming posts.

bizarre ad for scam plastic surgery

I do not feel that the mainstream media perspective about Wikipedia or other encyclopedias is reasonable. In this post I am going to talk about my perspective of the public perspective of Wikipedia and the Encyclopedia Britannica.

Encyclopedia Britannica is an English-language encyclopedia first printed in England in 1768. I think that shortly after it was published most people believed that it was the best general-purpose encyclopedia in existence, and I think this was true for more than 200 years. Their editing model is that the publisher hires scholars to write each article and then subject matter experts to review the articles. Undoubtedly they did the best possible job in doing quality check and being thorough in including as many subject areas as possible with the resources they had, and they were well-recognized and well-loved by the public.

buff model dude in some scam ad

Here is some information which I cannot cite or prove but which I based on my understanding of my culture believe. I think that Encyclopedia Britannica enjoys a lot of prestige in the generation older than me. It is my guess that if, two years ago, Encyclopedia Britannica’s editors were to contact any major scientist or research organization, and ask them to write an article about their work for inclusion in the paper published edition of the Encyclopedia Britannica, I think that they would get near complete acceptance of the offer. In cases where someone refused I think that usually they would offer to turn the project over to a colleague and have them write an equivalent article rather than refuse the request outright. I think that almost anyone who had a need to raise awareness of the work they were doing, especially if it were specialized, relatively unknown, and something for which they sought wider public awareness, they would love to have whatever they wanted to say about the field printed on paper in the Encyclopedia Britannica for the information that would distribute, the education it would allow, and the prestige the Encyclopedia Britannica could grant to a topic by having an entry on it. I think that many people who do not know that Encyclopedia Britannica ceased print publication would want to be included in it right now.

phone ad that no one would ever want to see

deodorant ad

The only thing that I am sure would not happen if someone clicked on this ad is that they would not get free cursors

an offer to download mystery software to your computer

Of course Encyclopedia Britannica was continually revised. It is hard to say what “revision” means because it is not a precise term, but it includes the meaning that as new things happen the editors update information in certain articles or add new entries. A revision is a little different from an “edition”, which is means some major revision. I have the idea that a new edition is completely revised – the entire work is fact-checked and presented at a certain point in time. With revisions some information may be new and some may be old and without checking a separate log of changes one may only be confident that the information one sees is at least current as of the latest edition date, and has only the possibility of having been revised more recently. This is something like the software numbering system where whole numbers represent a major edition and decimal numbers are an arbitrary sort of revision tracking.

The only thing that I am sure will not happen if one clicks this ad is that it will not give you $10,000

Britannica has been in continual revision since they published their 15th edition. This was in 1985. I think – Britannica has no motive to publish exactly what this means – but I think when they say their latest edition was published in 1985 and they put the date 1985 in their books on the copyright page, that means that they are promising that the information in their print edition is current to the best of their knowledge to the year 1985. I assert that it is absurd to use a reference which may not have been fact-checked or updated since 1985, especially considering that 1985 is before the jump in knowledge distribution which happened after the advent of Internet.

About the ads in this post – I pulled them off the Britannica article for biology. I counted 46 of these ads in the article, which no pictures illustrating any concept in the topic of biology. I assert that 46 is a large number of ads to have and that the article seems bulging with them. Most of these ads are animated and therefore bandwidth consuming. I would categorize some, like the plastic surgery ad or the instant muscles ad, to be for totally bunk products. Besides the 46 ads like this the page has more ads of other types. This is Wikipedia’s competition and what more people today respect than Wikipedia.

The video with the three of us talking is about six minutes long. We decided not to mention Seattle, the specific research network with which we affiliate, or anything about the time. The reason we did this is because we wanted to give other HIV vaccine community advisory boards the option to use this video in their own member recruitment.

There has been some question from the researchers about the content of our video and whether it might impede research. I do not think the issue is that anyone thinks our video is troublesome, but it is a new idea to them that anyone in the public might want to speak freely about their research. I know when researchers talk to journalists they have strict rules and are supposed to refer interviewers to public relations, but since we are not employed and since we mean well I think we should try to support the research. I am not sure of the implications of this, and have not yet met with all the staff I want to meet.

Here is the video. You should right click to save it. It is 60mb and I do not have a video player setup. If you can play WMVs in your browser then you can play this. It is not currently uploaded for streaming on any video site, so you should play it from your computer after you download it.

I had seen Sharon’s YouTube video explaining why she got into the biobanking business despite having a background in religious studies. The video was interesting to me but evidently the organization is having trouble marketing itself because its videos are currently not getting many views. There are many videos online about her, the organization, and the field, but I think they are still developing their brand identity. They have an unsatisfactory Wikipedia article right now. All of this is a shame because they are doing some of the most amazing work happening anywhere and they are playing an important role in the shaping of the future. I met Liz Horn, a director at the organization, and she said that she might be able to connect me with some published background information.

Jon Izant being polite as I get passionate

I sat at a table with strangers, one of whom who turned out to be the person I wanted to meet from from Sage Bionetworks, Jon Izant who does media. I told him that I would like to get in touch with him to collect media on the history of his organization and their mission.

I am starting to know more people than not at these events. I enjoyed myself thoroughly and I feel like I am part of something big and important which is making big improvements in the world.

this hamster has been neutered

Eventually we noticed that he had some problem with his testicle. He was about 8 months old and had never had a problem before, but now his testicle seemed swollen. He did not seem to be in pain but his interest in exercise was not normal, so we wanted to do something. So far as we know he was never injured. We took him to the vet and she said that she could neuter him and that might solve the issue, so we arranged the surgery.

She knocked him out and neutered him. He got two stitches and seemed not to mind. He was sleepy the rest of that day but walked around normally later in the day. We took away his wheel so that he would take it easy. He seems to be recovering nicely, and hopefully will start playing more soon. He does not seem to be interested in his stitches, which is good because we worried that he would bite at them.

I think the region I am covering is Washington, Oregon, Idaho, Montana, Utah, Arizona, and British Columbia. Obviously this is a ridiculously huge region and if there were any great amount of work to do then it would be impossible. Also it seems that I am the only identified person in this region who would elect to be a regional contact, or who knows about the program. I do a lot of phone chats with Wikipedians anyway so I am expecting to continue to do what I have been doing with no extra time commitment. I would like to encourage more people to be Wikipedians but I have not yet found or created a reliable system to engage people like I am engaged.

I hosted the monthly Wikipedia meeting last night at Allegro. I had just met Dennis the past month but he is committed to Wikipedia and has been for years. He came again last night and expressed that he would come every month. He, like me, is interested in organizational management and that is mostly what we discussed last night. Neither of us has ever made a Wikipedia “good article” (which is an official designation after peer review) and we talked about doing that soon. He is interested in the history of motorcycle engineering, including technological, business, social, and marketing aspects of the process. This is interesting to me because it has so many connections to histories of economies.

This week I saw Rahul, the professor from Cornish doing Wikipedia with me, and am working with Joe Tennis and his student Katherine Thornton who are organizing a research project on article categorization with a class of grad students in the i-school. None of these people have a clear idea of what they want to do but relationships take time and as long as they want to have occasional chats with me I want to have them with them.