DIYgenomics - Citizen Science Informed Consent

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The below placeholder is an example of informed consent in human genomic research. DIYgenomics has not yet publicly published an informed consent document.

See also: Partners IRB Consent Forms

(Source: Personal Genome Project)

What is Informed Consent?

Informed consent means you understand the procedures, risks, possible benefits, and alternatives before you voluntarily agree to participate in a research study. Before you elect to participate, you need to understand if or how this study may affect you and your family. This form is intended to help you make an informed decision about your participation in this study. The project website will be revised as needed, possibly on a frequent basis, and participants and prospective participants should check the website regularly to obtain the most current information about this and other studies.

I. PURPOSE

II. OVERVIEW

III. DURATION OF THE PROJECT AND YOUR PARTICIPATION

IV. PRE-ENROLLMENT PROCEDURES

V. ENROLLMENT PROCEDURES

VI. ONGOING PARTICIPATION FOLLOWING ENROLLMENT

VII. RISKS AND DISCOMFORTS

VIII. BENEFITS

IX. INTELLECTUAL PROPERTY

X. CONFIDENTIALITY

XI. REFUSAL OR WITHDRAWAL OF PARTICIPATION

XII. ALTERNATIVES

XIII. RESEARCH-RELATED CONTACT INFORMATION

SIGNATURE