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.