John T. Slattery is a member of the Department of Bioethics & Humanities at the University of Washington and of the Washington Phenotyped Biospecimen Resource. He was one of the speakers at that Friday 23 March communication conference. He spoke about a need to increase the information available to and usable by people receiving healthcare and participating in clinical research. I am about to repeat some things which I think he said and I want to portray him in entirely in a good way, even though I am going to critique some of the things which I think he said. I am sure he could clarify but I am using what I perceived as a starting point for my own thoughts.
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.