There have been many concerns in the news recently about discrimination, privacy and the appropriate use of samples. A donor’s information is confidential, meaning that their name is usually in their records but is kept secret. No insurance companies or employers will ever see any of the questions that the donor answers or know that their tissue was used in any experiments. Nothing that is donated will be used for anything besides research. If a donor is suspected of a crime, for example, the police cannot use DNA from their donated sample in their investigation. All of their information, answers to questions and their samples are kept carefully locked up and protected by computer firewalls and alarm systems.
When the donor first decides to give information or a sample, one of the forms they have to read and sign is an Informed Consent document. The document will tell them how their information and sample will be used, how it will not be used, where it will be kept, how it will be protected, and who will be able to see or use it. If the donor understands all of this information and agrees to donate, then they can sign the document and go on to give their sample and information. Informed consent is extremely important to read and understand. It protects the donor from having something done with their donation that they do not approve of, and it protects the researchers using their donation to make sure they are following the law and not breaking the established rules about their research study.
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