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Table 2 The three consent and data sharing scenarios presented to survey participants

From: Conducting a large, multi-site survey about patients’ views on broad consent: challenges and solutions

Consent Type

Data sharing

Biobank Description

(All scenarios begin with: Please imagine that you have been asked to allow your health information to be placed in a biobank at your local hospital or healthcare organization. If you agree to take part in the biobank, the biobank will share your health information with researchers at your local hospital or healthcare organization who wish to use the health information in the biobank for research. In addition, this particular biobank will….)

Tiered Consent

Restricted Database

…share your health information with researchers at your local hospital or healthcare organization who wish to use the health information in the biobank for research. In addition, this particular biobank will also place your health information in large national databases. This is to make it easier for researchers across the world to do research with the health information. Researchers from other hospitals, healthcare organizations, companies, and government agencies concerned with health in the United States and in other countries can apply to use your health information. When you sign up, you will be asked what types of medical research you will allow your health information to be used for The biobank will remove your personal information such as name, address, social security number, and birth date that could identify you before it is shared.

Broad Consent

Restricted Database

…share your health information with researchers at your local hospital or healthcare organization who wish to use the health information in the biobank for research. In addition, this particular biobank will also place your health information in large national databases. This is to make it easier for researchers across the world to do research with the health information. Researchers from other hospitals, healthcare organizations, companies, and government agencies concerned with health in the United States and in other countries can apply to use your health information. When you sign up, you will be agreeing for your health information to be used for all kinds of medical research. The biobank will remove your personal information such as name, address, social security number, and birth date that could identify you before it is shared.

Broad Consent

Publicly Accessible Online Database

…share your health information with researchers at your local hospital or healthcare organization who wish to use the health information in the biobank for research. In addition, this particular biobank will also place your health information in a large online database that anyone in the public can access. This is to make it easier for researchers across the world to do research with the health information. When you sign up, you will be agreeing for your health information to be used for all kinds of medical research. The biobank will remove your personal information such as name, address, social security number, and birth date that could identify you before it is shared.