How a business may make use of information gathered from users of their web site without getting into legal/ ethical complications.

Case 2- AllergiesNet

Scenario: A fictitious web site offers information about seasonal allergies and potential treatments. The site displays banner ads for non-prescription items often used by seasonal allergy sufferers. They have been careful not to provide specific medical advice/ endorsements to individuals but do offer chat rooms in which visitors can join in discussions about allergies. Participants must register with name, password and e-mail address to join in chat sessions and may choose to receive monthly e-newsletters focusing on specific allergies. Shortly after the newsletter is sent, the chat rooms fill with visitors discussing the content of the newsletter.

A major pharmaceutical company has offered to pay AllergiesNet to include information about a new drug they are researching. They are especially interested in consumer reaction to the drug's side effects. They wish to be provided with a transcript of all chat room sessions for the two weeks following the newsletter's release.

The privacy statement of AllergiesNet does not specifically prohibit the above but they must be careful not to violate the spirit of the policy and their commitment not to endorse specific remedies. This would implicate providing medical advice and open them up to a law suit. If they wish to pursue this proposal, the procedures and disclosures I recommend are as follows:

1. In the newsletter preceding the report:

Disclose that AllergiesNet has been approached to participate in a study to evaluate the research on a new drug that may reduce the symptoms of hay fever. The anonymous company has asked to receive a copy of all chat room transcripts for the two weeks following the release of the upcoming newsletter to evaluate AllergiesNet members reaction to the report.

Emphasize that AllergiesNet policy has and will always be to not endorse any specific remedies. Further point out that while the chat room names are included in the transcripts, AllergiesNet will not disclose e-mail addresses or other private information entrusted to their care.

Acknowledge that some members may still be uncomfortable with their inclusion in this study and suggest that they may choose not to visit the chat rooms during the specified period while also offering them the opportunity (with a link) to opt-out of AllergiesNet services. Include a checkbox on this opt-out page that the member may check indicating that this study is the reason they are opting-out. Monitor the number who have checked this box on a daily basis.

End the letter with an indication of your excitement of the membership being offered an opportunity to participate in the study and having the potential of influencing the development of a new drug that may relieve the symptoms of fellow hay fever suffers.

2. Publish the above information on a web page and have a link to it on the homepage and on the entrance/ sign-in page to the chat rooms Also place a link to this within the chat room pages. The link may be stated something like "AllergiesNet Members to participate in evaluation of drug research report - Learn more about it."

3. In the newsletter containing the report:

Be sure to include in the contract with the company that the submitted report must not include information that will specifically identify the drug or the company producing the drug. Arrange for a meeting with your experts and theirs to go over the document and verify/ adjust the language to insure compliance before publication.

You may want to include a short poll/ survey of some sort asking for their opinion on the inclusion of this research report in the newsletter.

Again inform the membership about the chat room transcripts and caution chat room participants about disclosing e-mail addresses or other personal information while in the chat rooms. Also provide a disclaimer that AllergiesNet will not be liable for any of this type of information that is offered by participants in chat room discussions.

4. For the two week period following the newsletter:

On the entrance page to chat rooms, prominently indicate that from "Start Date" to "End Date" that transcripts of chat room discussions will be provided to a pharmaceutical company you are currently involved in conducting a study.

In the chat rooms and on the site, reword the above information and links to indicate that the transcripts will be provided to the anonymous pharmaceutical company and caution chat room participants about disclosing e-mail addresses or other personal information while in the chat rooms. Also provide a disclaimer that AllergiesNet will not be liable for any of this type of information that is conveyed by participants while in the chat rooms.

5. At the conclusion of the study:

In both the following newsletter and on the site:

Indicate your appreciation of the membership's involvement in the study and their comments. Provide the membership with the results of the poll/survey suggested for the newsletter and perhaps indicate the percentage of people who opted-out or an increase in the number of people who participated in the chat rooms. Invite those that have opted-out to rejoin the community.

Reiterate your privacy policy and commitment to not endorse any specific cures.

Remove the page links and redirect those inquiries to the pages created for this program to the above mentioned "appreciation page" with a link to your privacy statement page. Place these old pages in a secure folder for future use if you should be approached to do this type of study again.