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Protecting Information Provided Anonymously
You have a grant to develop a Web-based program of genetic counseling. Clients who navigate to your Web site and use the program do not identify themselves by name. Nonetheless, insurers, prospective employers, and others would place a high value on the identities of clients and might use this information in discriminatory ways. Should you warn clients about this? What level of security should you provide to protect the identity of clients? K5R says: A published privacy policy should be readily available to the participants, and a strict level of security with a mandatory firewall and/or encryption should be in place to protect the public in this situation, as extraction programs might still be able to glean email addresses for those giving information. P3L says: The Web site should prominently display its policy toward dissemination of data. The HIPAA regulations would also pertain here. The policy should be reviewed by competent legal counsel to ascertain the validity of the policy. (e.g., Despite what the policy says, could the authors be required by the court to divulge information?) Simply stating that all information will be kept confidential is not sufficient any longer.
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