Today I participated in a meeting of the Bioethics Interest Group in the Faculty of Health Sciences at McMaster University on the subject of ethics and blogging where we had a lively conversation around the use of blogs for medical research. For that I created (with Lisa Schwartz who organized the meeting) a fictional case to problematize the issues. See the extended entry for the case. BIG is a monthly informal discussion of topics related to ethics in health care and biomedical sciences. Some interesting questions that came up:
- What can we assume about a blogger? Can we guess at how they assumed their blog would be used?
- Is quoting a blog comparable to quoting an online article? or should we try to get consent? More generally, what can we compare blogs to was we try to work out the ethics?
- Would getting consent change what was being written?
- Would podcasting conversations like the one we had help develop community awareness around the issues?
Case:
Martine finds that there hundreds of blogs by breast cancer survivors and they are source of lots of searchable text on the experience of cancer survivors. In some of them there is identifiable information not only of the author but of the author’s friends and so on. Some bloggers write about their husbands, children, and so on without thinking about the privacy of those people. There are pictures.
Martine develops an aggregation tool that sucks this stuff up into a database that she can search as qualitative data about breast cancer survivor experience. What are her ethical and research obligations. What are her ethical and research obligations?
Quality:
We need to ask if we are sure all the blogs we aggregated are actually by cancer survivors and whether even those that are might be deceptive. We might try to contact a sample and compare what they write to what they say and see if there are standard distortions that kick when people write blogs. We might even, with a large enough sample, be able to estimate a deception rate.
Aggregation:
We would need to ask about the status of the database and its use for research and publication. What exactly is it and what can we do with it?
Anonymizing:
We might want to run anonymizing routines through it to make sure that no one is identified. There are things we could do to minimize the misuse of the data by ourselves or others.
Publication:
What if Martine then wanted to publish online the database in a form useful for research by others. All of the content in theory could be googled and someone could find the original. All of the entries are online already, but not in the aggregated context.
Other Issues:
Open Research: What obligations do others have to reference open research blogs? What obligations does the research blogger have to respect the privacy of others?
Wikis: What special problems do collaborative web authoring environments like wikis pose? Is there an implied license to edit and quote when someone posts to a wiki?
Technology: How has the web changed the nature of the public research sphere and its publishing cycle?