Participating in research is one of the most powerful ways patients can make a difference in advancing scientific discovery. This is especially true for individuals who have a rare disease, such as a hereditary cancer syndrome. It can be very rewarding to know that you might be able to contribute to the advancement of science. However, research is not without risks and it is important that individuals understand the potential limitations, benefits and risks of a study before agreeing to participate.

Having spent most of my career involved in creating, designing, and implementing research, I have had the honor of helping hundreds, if not thousands of individuals make a decision about participating in various research studies. I’ve compiled some key things to think about when you, a loved one, or even a friend is making a decision about participating in research.

Do I have to participate in research? Participation in research is completely voluntary. It is ultimately your decision whether you participate.  It is even your right to participate in a study and later change your mind.

Why should I participate in research? Even if I listed out all of the reasons I could think of why people participate in research, there would still be countless others that I didn’t include. It is a very personal decision to participate in research. One of the most important things to understand is that there is no right or wrong reason for participating. Everyone is different and their reasons for participating in research are as well. The most common reason I have heard from participants over the years, is that they want to help others.  In some cases research participants may get new treatment options, free or low cost medical care, covered travel expenses and/or access to medical experts that they may not have had otherwise. Various studies have no direct benefit to the research participants. Though, feeling empowered knowing you may have helped advance science is always a potential benefit.

What is informed consent?  Informed consent is the process of providing potential research participants with information about a particular study so they can make an educated decision about participation. Depending on the type of study, informed consent can often look very different.   For example, research involving a new drug will have a much more involved consent process than a study involving a onetime questionnaire. Informed consent often involves a discussion of the goals of the study, the potential risks and benefits, what is being asked of the participants, who is performing the study, and eligibility requirements. Informed consent is often an ongoing process, so you should be given contact information for any questions that arise during the study.

How do I find research studies to participate in? The National Institutes of Health (NIH) has an online database of clinical trials. Clinical trials are a type of study that looks at innovative ways to prevent, detect, and/or treat diseases.  You can search the NIH for clinical trials through their website at ClinicalTrials.gov. Another way to find potential studies you can participate in, is by  joining ResearchMatch. ResearchMatch is an NIH funded project aimed at connecting 1) volunteers trying to find research studies, and 2) researchers looking for study participants. Potential volunteers can register with ResearchMatch for free on their website. https://www.researchmatch.org/. You can also speak with your healthcare providerabout specific research studies you may be eligible for.

What is Ambry doing to help research? We at Ambry Genetics believe the world would be a better place if all human disease was understood, which is why we created AmbryShare. We are committed to advancing scientific discovery and have partnered with researchers around the world to help understand the genetic basis of all human disease. For updates regarding our internal and collaborative scientific publications and presentations, please see our quarterly electronic biography called Stay in the Gnome.