Sharing data

How do patients get involved in advocacy in genomics?

For many people, their first experience in advocacy in genomics begins through sharing their data as a research participant. For example, patients may be offered genome sequencing when they are searching for the cause of a health problem. Often in the medical system, when patients agree to various medical tests, they are also asked if they agree to contribute their medical information for research purposes.

Testing for medical purposes and contributing this information to research should only happen after patients have a fully informed conversation about the risks and benefits, understand how their data will be used and stored, and are given a chance to have any questions answered. This approach ensures that participants can make an informed decision about whether to share their samples and data. If they agree, it means they have given informed consent. This was covered in more detail in week 1, in the steps on genomics research participant journeys and genomic patient journeys.

Current understanding of human genetics and genomics is largely due to the many people who have agreed to share their data for research purposes. As part of the agreement for people sharing their data, this data is carefully managed by the organisations that collect it, and it can be used to answer many research questions.

Patients may contribute data in other ways, like agreeing to participate in a clinical trial of a new treatment or answering a survey about their experiences.

When patients see that their data has the power to answer research questions and potentially improve health care, they might gain an interest in understanding more about the research process and how they can influence it.

Discussion question:

Have you ever shared your data by being a research participant? If so, how did you feel about the experience?

If not, how do you feel about possibly contributing as a research participant in the future?

Please share your comments below.