Return of Results
In many health research studies, researchers send the participants the results of various tests produced during the course of the study, including x-rays, bone density results, blood tests and the like.
Research projects using the biobanks will be likely to involve studies into genetic disease. Results of these studies can link a particular gene with a particular disease or multiple diseases. But return of results in genetic research is more difficult than in other research health studies, and particularly for a biobank which is established to operate as a research platform over many years.
Will I receive individual results?
No. For a number of practical reasons it is generally not considered possible for a biobank to return individual results to participants.
Why is it harder to return individual genetic results?
1. Results don’t necessarily mean you have a disease:
If you have a gene mutation, which is linked to a disease or a number of diseases, it does not mean that you will necessarily develop that disease or not. Genetic results are not usually unambiguous evidence.
2. Research results are not for clinical use:
Even if genetic research shows that a person is likely to or not to develop a disease, a researcher cannot tell them. For a participant to be told of the results, the National Association of Testing Authorities must first repeat the tests so that the results can be used for clinical purposes. If they do that, then the participant can be told the results by a qualified genetic counselor.
3. Re-identification of samples is complicated and costly:
Your samples have been de-identified for confidentiality and to protect your privacy. Researchers do not know participants names or contact details. It is possible to re-identify samples. A code holder can access the information to do this (Read more about privacy and confidentiality [LINK to read more section]). The researcher would have to go through biobank administration to do this. This would be costly.
4. A participant might not want to know their results:
Not all participants would want to know their individual test results. Receiving knowledge about potential future diseases can be distressing. Even though a participant may have chosen to be contacted about potential future disease, they may have changed their mind. (Read more about making your choices when you give consent. LINK )Although it is possible to ask participants at the time of their donation, they may change their mind over time. Further, given the long time periods involved in this type of research, many participants may have moved or have passed away in the interim, making contact impossible.
5. For these reasons it is generally not considered possible for a biobank to return individual results to participants who have donated samples.
Will I receive any results?
Researchers make their overall research results available as widely as possible. They usually publish results in newsletters and on biobank websites.