BLOG

Imagine you've donated a small sample of your blood or saliva and allowed access to your health data to a biobank, hoping to contribute to medical research that could benefit countless others. Months or even years pass, and significant discoveries have been made using your samples. Some of these findings might be expected, while others could be unexpected, and they may directly impact your health. Would you want to know about these discoveries? Or would it be better to trust researchers to focus on advancing science independently without sharing potentially surprising findings with you?

Biobanks store vast amounts of biological samples and health data for current and future research, advancing medical science in unique ways. However, there is a grey area when it comes to returning individual health-related findings to participants. A recent survey of ethics experts conducted by the irecs project reveals that many experts struggle with this issue. Only around 60 percent of ethics experts consider themselves competent while evaluating issues related to the return of individual health-related findings.

What can biobanks offer you?

Biobanks approach the question of returning health-related findings in different ways, and it's worth thinking about how these might align with your expectations. Some biobanks choose not to share any individual findings at all, focusing solely on advancing research rather than providing personal health insights. Others focus on sharing only critical medical information—like identifying genetic risks for serious conditions that can be prevented or treated. This approach prioritises health interventions, but it might mean you don't hear about other findings that could still matter to you.

Others are discussing taking a more flexible approach, offering participants the chance to receive information that might not directly lead to medical action but could still be helpful for decisions, like family planning or understanding personal risks. For instance, discovering a genetic predisposition to certain inherited conditions that could be passed on to children might help you make more informed choices when planning a family. This approach gives you more control over what you learn about your health and allows you to decide what's most relevant to your life.

Some biobanks also offer information about diseases that are influenced by both your genes and your environment. For example, you might learn how your genetic makeup could be related to conditions like heart disease, diabetes, or certain cancers. While this can serve as an additional reminder to stay physically active, quit smoking, and eat healthily, it could also lead to unrealistic expectations if you expect it to provide clear medical answers.

By understanding what kind of information a biobank is likely to share, and focusing on realistic outcomes, you can better appreciate the value of your participation without unnecessary disappointment.

Making the most of your participation

When you participate in a biobank, you might wonder: do I want to know everything researchers might find or just the things I can act on? Some findings offer valuable health insights, while others leave you uncertain or anxious if they're unclear or not actionable. That's why many biobanks focus on sharing medically actionable results—the kind of information you can act on to protect or improve your health. For instance, following the guidelines of the American College of Medical Genetics and Genomics, biobanks might prioritise sharing findings related to well-defined health risks, such as certain inherited cancers or cardiovascular conditions, where early intervention could save lives.

As a participant, you have the opportunity to influence the way biobanks share findings. You play a key role in shaping biobank practices by considering the type of information you value most—whether it's actionable health insights, genetic details for family planning, or simply contributing to broader scientific advancements. Your preferences and feedback ensure that these initiatives respect participants' rights, prioritise meaningful findings, and continue to advance medical research in an ethical and participant-centred way.

Author:

Vygintas Aliukonis, University of Vilnius and Jurate Lekstutiene, European Network of Research Ethics Committees (EUREC)