Oct 27 reading

The Immortal Life of Henrietta Lacks by Rebecca Skloot

I was very interested in this book, and really enjoyed it. After I finished it I was trying to decide what to write about. I could go on and on about the ethics and importance of HeLa cells. A summary of the book didn’t seem like it would relate the book to the themes of our class.  I went to the author’s website to gather some more information, and I ran across this article that she wrote.  

The author talks about how she discovered some of the historical information in her book. Surprise, surprise she consulted librarians! She talks about asking questions about things that would not normally be considered “important” information. Things like what color the walls were painted, or what kind of shoes a person wore.  If I were in charge of saving documents, those are the details that I would consider unimportant, things I might not keep.  Skloot points out “They're [the details] the ones that make narrative nonfiction possible.” That just goes to show how much I have to learn about librarianship!  It is not our job to decide what information is important, but to provide the information patrons want.  

Oct 20

Most of the readings this week dealt with what I always thought was central to a librarian’s role. Reference and helping users find information. The articles all dealt with this in different ways.

Elmborg’s article talks about the reference librarian being a teacher. Instead of jealously guarding information to keep the job mysterious and necessary, reference librarians should teach people how to do their own searches and research. One of my favorite authors, Diana Gabaldon ,speaks well to this point in her blog from Jan 24, 2008. She points out why doing your own research can lead to better search results.

“My favorite analogy regarding research is what I call "Hot dogs and beans." Consider that you're planning dinner for your family. You decide to have hot dogs and beans; tasty and cheap and everybody likes them. You have a busy life, and thus an assistant—you tell the assistant to go to the store and get hot dogs and beans for you. The assistant does, and you have a nice supper.

OK. If you go to the store yourself, you're intending to get hot dogs and beans. But on your way to the sausage-and-cheese section, you pass the fresh meat section—where you observe that there's a sale on organic chicken breasts. "Ooh," you think. "I could make chicken curry!" So you get the chicken breasts, go back through the aisles to get spices, vegetable juice, mango-peach applesauce, mango chutney, jasmine rice…and coming back toward the front of the store with this, you pass through the fresh produce section and see the water droplets gleaming among the fresh lettuces and long green onions—and it occurs to you that a shrimp salad would be Really Good with the curry—so you go back to Meats and get half a pound of fresh baby shrimp, then to the condiments aisle for dressing—and thence to the chilled wine cabinet near the checkout, for a lovely dry Riesling, which will just top this meal off….

Well, if you write historical novels and you depend heavily on research assistants, you get hot dogs and beans.”

I couldn’t have said it better myself!

I liked the Mom and Me article by Wiegand. It very clearly points out the differences in the way different people value different information. What seems like the best, most knowledgeable source to one person might seem superfluous to another. When the author talks about his mom asking the salesperson if they’ll throw in 4 free floor mats I had visions of my Grandmother in my head.  Wiegand’s article supports Elmborg’s article. If people know how to do their own searches, they can find the sources most important to THEM, not the sources the librarian THINKS are the best.

The Morris article was very heavy, and she lost me somewhere in between constructivism, Belkin, Taylor and Kuhlthau. Between all the theories and terms I had to look up, and all the reference to other authors and articles I found this very, very hard to read and follow. Hopefully we can talk about the main points of this article in slightly clearer language in class so I can figure out what this article is about!

The Enola Gay article was a bit different from the rest, as it talked more about the lessons to be learned from a very controversial exhibit. The author points out many mistakes that were made, but I want to focus on this “For the defense of its intellectual independence, a museum needs a base that can withstand attack and that is professional, not political” (302).This statement applies to libraries, archives and museums. A library should present a neutral tone (unless it is a very specialized library) and sometimes the neutral voice is not the popular voice.

In the Enola Gay example, many people objected to even showing pictures of Japan after the bomb was dropped, never mind suggesting that there might have been a different option available. Yet, without being able to present different sides of a story, all the museum would be doing is propagandizing. Clearly, it wasn’t popular to show what the exhibit did, but it is right to not be one sided.

The trick is being able to present all the evidence, without major repercussions. Funding being cut, support being withdrawn, even the loss of a job.  If a library can have a base that can withstand political pressure, and be as objective as possible would be the ideal. But creating that base would be very tricky.

Oct. 13 readings

Everything is Miscellaneous David Weinberger

This book made me say “Ah Ha!” as I read it. I’ve never thought very much about the physical order of things vs. the digital order. When I organize any of my own information digitally, like photos, I always operated under the assumption that everything had a single place. I always thought simpler was better. However, after reading Everything is Miscellaneous, I realize that with digital information, complicated is better. The analogy he uses throughout the book of things be organized on a “tree” with each piece of datum being a leaf really made sense to me.

The more labels I put on a given picture, the easier it will be to find later. This would never work if I had to keep every picture under every heading in different physical photo albums, but it works wonderfully if I give each picture many tags in my digital album. Instead of labeling this picture “Ireland 2010” I can label it “Melissa, Ireland 2010, 2/19/2010, Ring Fort, Sheep’s Wool (what I’m holding in my hand), what we found after driving over those INSANE mountain passes”, etc.

The benefits of being able to label things with as many words as possible makes finding information (digitally) easier than ever before. There are so many ways to sort and search it boggles my mind a little bit. I can only imagine how each successive generation of search engines will benefit data retrieval.

The book contained a lot of other good information. I learned a little more about Wikipedia. I have slightly more trust in the info I find there now than I did before. The fact that the amount of space available in printed material necessarily making some topics more complete than others makes a lot of sense. The encyclopedia does not have physical space to print EVERYTHING. Wikipedia does, and so in Wikipedia a topic is given the space it need to be complete. In print the information has to fit in the space allotted, which will inevitably leave some information out.

Some of the information on the Semantic Web (190-195) went over my head, I really couldn’t figure out what the Semantic Web is, so I hope we’ll talk about it in class.

Now, I’m off to add tags to all my under-labeled photos…

Information as Thing Michael K. Buckland

The definition of “Information-as-thing” is important, as the author points out in the summary, because “it is the only form of information with which information systems can deal directly.” In addition “Varieties of “information –as-thing” vary in their physical characteristics and so are not equally suited for storage and retrieval.”

“Information-as-thing” can be any physical thing that is informative. Letters, documents, magazines, most anything you can see. Some things are easy to store for later retrieval. Books, magazines, etc. are commonly used “information-as-things.” They are relatively easy to catalog and search for using existing data retrieval methods.  Other things are more challenging. It is hard to store the view of the lake from the terrace. It is easier to store a picture of the view as a representation of the view. It is not the same as seeing it in person, but it is as close as we can get.

The science of data storage and retrieval is a very important one. Bring able to define “information-as-thing” as opposed to “information-as-process” and “information-as-knowledge” is very important for the field.

The Power to Name Hope A. Olson

A lot of what I read in The Power to Name made me think of Everything is Miscellaneous. Many of the problems the author points out are a direct result of having to put materials in one physical location, as opposed to being able to “tag” them so they will come up in searches in multiple areas.

Some of the things the author points out about the language being used are valid points. Prostitutes are assumed to be female, unless listed specifically as “male prostitutes” and so on. This is a problem that needs to be addressed.

The problem of trying to classify the books Talking back: Thinking Feminist, Thinking Black and When the Moon Waxes Red illustrates where “digital disorder” would be very helpful. Granted, the books still need to placed on the shelves in one physical location (unless there are multiple copies of books shelved in multiple places). However, if when searching for books you can search under multiple “tags” or “topics” you can more easily find the information you want. That information can be matched to other information that more closely matches the particular information you want to find. Assume Talking Back is filed under Afro-American, Feminism-United States as it is under the LCSH headings. If you have read Talking Back because you are interested in “thinking black” and you go to the physical shelf where it is placed and look to see what is around it, you won’t find any other books relating to what you are interested in. However if you do a digital search for “thinking black” you will find materials related to your topic of interest.

I can see this being a big focus of future data retrieval systems used in the library. The current search engine I use at my local public library is quite limited. More often I do an internet or Amazon search for the topic I want, and then search the library’s catalog by title. I get faster, better results that way.

more week 5 readings

“Informed Consent and Federal Funding for Stem Cell Research”

As I said in my comments on “Body of Research” this is a really sticky issue. Getting informed consent from tissue donors is an amazingly complex issue. There are so many issues and facets to cover in informed consent.

 The author makes the statement that there are so many disparities and problems with the consent forms used to collect tissue to create stem cell lines that the NIH could not possibly have chosen stem cell lines that met the regulations set forth by the Bush administration. The author suggests that the whole system is so flawed that the whole process needs to be reviewed.

I personally think that the rule about using federal funds only if one of the 21 approved stem cell lines is used is at best arbitrary and at worst inhibits useful research. These 21 lines were supposed to be approved for use using certain criteria. The author argues that these criteria were in fact not followed, and therefore new cell lines should be able to be established. Cell lines that DO follow the current criteria set forth.

It is obvious in the chart on page 45 of the article that there is no standard consent form for tissue use. Because there is not, it is hard for researchers to know what type of research they can do on any given tissue.  Thus the NIH guidelines for use of the stem cells are not necessarily the same as the restrictions set out in the original consent forms.

Does this mean that the current approved stem cell lines should be abandoned and standardized regulations adopted, in order to allow the creation of new stem cell lines? Does that mean that any scientist who has done years of research using the NIH cells using federal funds would have to start over with new “approved” cell lines in order to keep their funding?

New technology is full of stumbling blocks. Since the technology isn’t established yet, it is very hard to see what the rules and regulations will be in the future.  Remember when there were Beta and VHS players and tapes? All the people I knew who invested in Beta were very disappointed when VHS won the market share. It can be much the same in science. If it is decided that X cell line should no longer be eligible to receive federal funds, is all the research that has been done on them wasted, and scientists will have start over with a new approved line? Or should the lines be grandfathered in, despite the fact that the cells lines were established with what are now considered unacceptable means?

I don’t have a good answer for this question, but I think it is very important that standardized guidelines are setup as soon as possible to minimize these issues in the future.

“Access to Online Local Government Public Records: The Privacy Paradox”

I have often wondered why so much government information is considered public domain. My husband and I own rental property, and it is very easy for us to check a prospective renters’ financial history. But should it be so easy? We always get permission to do such a background check, but many people would not even be aware that anyone can access records at any time.

I personally am not very comfortable about the amount of information available. Do I want any person to be able to be able to look up how much I paid for my house, or to check if I have a criminal record?

The author says that “Local governments seem to be quite successful in meeting the needs of their citizens by preventing sensitive information exposure in their public records.” I don’t agree with the author because there are things the author didn’t consider sensitive information that I consider sensitive. The author classified both a person’s signature and a person’s photograph as “level 4” or a high degree of sensitivity. The author then shows in the chart on page 16 that all the Florida counties had level 4 information available for both real estate and civil court information.  In what way would an average citizen be benefited by being able to see my signature or my picture (without my knowledge)? I would prefer that that type of information be kept private.

Body of research

Oh boy, I can see this topic being very contentious, and I find it really interesting.  The crux of this article is that there is no federal law regarding property rights of human tissue. The article highlights a few of the issues involved with tissue research. I don’t claim have an answer for what is fair or ethical use, but I have some thoughts on the topic.

The article says “Investigators and universities have argued that recognizing property rights in excised tissue would threaten their ability to use stored tissue samples effectively.” Yes, this is true. Trying to establish what tissue belongs to whom, and whether or not they give permission for research would be very difficult.  But I can’t think of anything a person can claim a stronger right to than their own body. If a person has ownership of anything, it should be their own body.

Using stored tissue where the donor is not alive also creates issues. For example the use of tissue from a person who had a disease, such as the 1918 influenza, would be immensely useful, even critical to public health. However, the person who donated that tissue, even if it was an informed voluntary donation, could not even conceive of the used it might be put to 100 years later. How can you have informed consent for that?

How about “its [a person’s tissue] use without the patient’s consent may be permitted under federal research regulations, if a patient’s identity is unknown or adequately obscured.” This will prevent issues of discrimination based what is discovered using the tissue, but it does not take into account people’s moral feelings about tissue use. Different people have different views of what constitutes life. Some might feel that experiments done on human tissue, especially embryos, would constitute torture. If the experiment ended in the death of that tissue, it might also constitute murder.  What if some experiments done on a Roman Catholic’s tissue lead to methods used in abortion?  How would Christian Scientists feel about any use of any tissue type? And what if tissue from a Quaker was used to develop a technology used in warfare?

In the absence of laws, we can hope that scientists would use their best judgment on these issues. However the Dean of the Stanford School of Medicine said “If you did [have objections to your tissue being used] I guess you could sit there with your ruptured appendix and negotiate” (Skloot 206). I find that statement shocking and disgusting on so many levels. It doesn’t make me feel that all scientists have our best interests at heart. It can’t be logically argued that all science is done solely for the good of mankind. And a scientist can’t just assume that whatever research “donated” tissue is used for would be a use the donor would approve of.

And all of this only deals with the ethical issues of using tissue, what about the financial issues involved?