Return of Research Results

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The return of research results is a difficult yet important issue to tackle when dealing with human samples for research. This comes up whenever someone gives a sample to a biobank, or if someone undergoes genetic testing and/or sequencing in order for the doctors to find the answer to a health problem. In addition to the findings that the doctors and scientists are looking for, they may also find other health conditions that you could be at risk for developing years down the line.
If you are going to participate in this type of research or if you need to have a test done that could produce unexpected results, you should prepare yourself for this possible situation. Some unexpected secondary findings could benefit you because there could be a specific plan of action that your doctor could help you with to prevent or screen early for the disease. However, other genetic information scientists and doctors know little about, so it could just be worrisome to learn of these results. Here are some points to think about regarding research results:

  • When you donate to a biobank, make sure you decide beforehand whether you want the researchers to inform you about any results.
  • Talk to the researcher about the system for returning research results to participants. Be sure to clearly ask what type of information he or she will give you, ranging from diseases the research knows little about to information that could provide health benefits if the findings are shared with you.
  • Similar to voluntary research, if you are having your genome sequenced or genetic testing done, find out if they are only looking for very specific things or if the research could produce secondary findings.
  • If so, talk to your doctor about what they can and will share with you before you start the process. That way, you decide how to deal with the situation beforehand and unexpected negative situations don’t come up later in the process.

Sources:

  • Wolf SM, Crock BN, Van Ness B, et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med. 2012;14(4):361-84. Available from: PubMed.gov, Bethesda, MD. doi: 10.1038/gim.2012.23.
  • Nature News Blog [Internet]. Erika Check Hayden. 2012 Mar. Available from: http://blogs.nature.com/news.