Information about concerns related to your privacy, confidentiality, and safety and ethics related to our genetic research.

What information is shared with the National Institutes of Health (NIH)?

A portion of the extracted DNA is saved at NIH for their research. We also provide the NIH with information gathered from the interviews you took part in when you visited the study, such as your age, sex, twin status (i.e. identical or fraternal), and a meaningless numerical code that only shows if you are related to any other samples.

How do I know my DNA is safe (i.e. from the government or insurance companies)?

stampThe confidentiality of the DNA sample you provide will be closely guarded; samples are identified by number only so the people who have the DNA have no way of identifying whom it came from. Your DNA sample will be stored at a laboratory at the National Institutes of Health’s National Genetics Repository at Rutgers University in New Jersey.

 

Is this genetic research ethical?

 

manWhile no one can decide for you whether something is ethical or not, here is some information regarding the approval of this study.

Before we can begin any study, including this particular one, we need to run our research plan past an institutional review board (IRB*) that determines whether the study is ethical or not. If the IRB determines that a study is not ethical, that study would not be allowed to conduct research. Our study passed these ethical standards for several reasons. One major factor is that we provide you with detailed information about what you are going to be involved in, both verbally and on paper (i.e. the consent form), and obtain your written consent before we do anything. A consent form must be signed by all participants before we can do research with any of the DNA sent to the NIH repository. We must detail all aspects of the study to those participants, as our consent form clearly does. If we were to do anything with your DNA that you did not consent to our research would be shut down.

*To learn more about the University of Minnesota’s Institutional Review Board, click here.

 
     
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