“The researchers promise, as required by federal and/or state health privacy laws, that no personally-identified health information of research subjects will be disclosed outside the research group and that security measures will be applied to protect the data.

“Researchers must also have the project approved by a Human Subject Protection or Privacy Board. These groups decide whether the importance of the research and the safeguards promised outweigh potential risks to privacy or data security, or other risks to research participants.

“Some say that patient interests in privacy and data security are not protected well by such procedures, and there is little policing of researcher practices. It is argued that patients must be asked for consents—either specific or general—for all health research.

“Health researchers say many patients would not respond or agree to requests for permission, creating a sample that would not accurately reflect the group whose health condition or status are being studied. They also say obtaining permission for each health study would be very costly and time-consuming, and there is no pattern of health researchers disclosing the personal medical information of research subjects.

“In these situations [which of the following answers] is closer to your opinion?”

• “Researchers would be free to use my personal medical and health information without my consent at all.”
• “I would be willing to give a general consent in advance to have my personally-identified medical or health information used in future research projects without the researchers having to contact me.”
• “My consent to use my personal medical and health information would not be needed as long as the study never revealed my personal identity and it was supervised by an institutional review board.”
• “I would want each research study seeking to use my personally-identified medical or health information to first describe the study to me and get my specific consent for such use.”
• “I would not want the researchers to contact me or to use my personal or health information under any circumstances."