When considering how the internet impacts the ways researchers deal with human subjects, several different considerations should always be taken into account. The first has to do with database privacy. For instance the human genome project has a database of names and identities associated with genetic coding that is completely open source. Of course these subjects have all agreed to have their genes mapped for scientific posterity, but what about those who wish to participate in the mapping project, but wish to keep their information private?
Well, this is a problem. Many people will probably opt out of human subject research for privacy concerns. As this type of information becomes available to the wider public, how can we insure that databases be used and disclosed ethically and responsibly? How will this impact the terms of health insurance and hiring practices?
Also, the chance of involuntary disclosure is likely to increase when internet technology comes into play. The whole question of internet research might challenge our notions of sample accuracy, as study subjects may increasingly draw from self-selecting technologically connected populations. On the other hand, internet research could decrease or eliminate the need for actual subjects altogether, as the potential for online simulation can be tapped into.
It's clear that the internet poses new ethical challenges, that the laws and regulations involving human subjects will have to catch up to as problems are addressed.
Hi Nicole,
ReplyDeleteThis is a wonderful post with which I'm in agreement.
So I managed to finally get to sleep late last night but then I had a troubling thought. Does the ecology in which one responds change how people answer? I'd assume so.
When conducting internet research, we cannot observe contextual factors (such as if doing an ethnographic study) and we cannot control for those factors (as if doing experimental design).
This causes me to wonder - is Internet research a new methodology or extension of existing methods?
Glen
Hi Nicole:
ReplyDeleteI read your post about the human genome project and database privacy, and agree that it creates problems in the future that we may not even be aware of - for example, what if the notion of privacy changes in the future and it affects these past practices? How do we protect people who elect out of having their private information disclosed, when the notion of privacy may change in years to come?
I agree that there is a problem with how insurance companies may use private information to manipulate future insurance claims or even insuring people (for example, they might say, remember when you were tested for HIV? Obviously you are engaging in risky behavior, so here is your punishment.) And hiring practices are already being affected by information that was once private - including pulling credit reports and court records. As the web takes over, there seems to be little confidentiality left, so we really must become mindful of taking care of others.
Wendy