Now that I have two sons with juvenile diabetes, calls have been coming in. “Would you and your boys be willing to participate in a study?” At Riley’s first visit at the diabetic clinic, the endocrinologist said, “There are various studies underway in which your boys could participate.”
Studies. Well, I’m sure this is a good thing, because it shows that somebody out there is trying to get to the bottom of this mysterious disease. What environmental factors trigger JD? Why do certain kids seem to contract it and others don’t?
I received an email from an old friend from high school. She also has two children–a son and a daughter–with juvenile diabetes. I asked her whether the “study folks” kept coming after her. She said that because her two children contracted the disease at the same time, they were considered to be examples of the “virus as a cause” theory. Supposedly there is some kind of virus out there that, when the genetic factors are present, will kick start juvenile diabetes into action. My sons were diagnosed eight years apart. So did the mysterious virus pay our family a visit, and then return eight years later? Or is there something else going on?
So now my boys have the opportunity to play a small role in answering some of these questions. Should I allow them to participate? Emphatically, yes. I think we’ve got a responsibility to shed whatever light we can on this baffling illness. Yet, there are some “howevers” that come into play.
Should Your Child Participate in a Study?
If your child has a disability or chronic illness, you may find yourself in this same predicament. You may be asked to participate in a study, or help with some kind of medical research. Whether or not you agree to participate is ultimately up to you. However, you should ask the following questions:
- Who is conducting the study?
- What information is being sought?
- How long has the study been underway, and how many people are currently participating?
- What will be required of my child? What will be required of me? Will there be pain involved? Inconvenience? Endless amounts of paperwork?
- Will our family’s personal information remain entirely private? How can we keep our personal information confidential? Will photographs be taken?
- Will our family be compensated financially for our time and travel?
- Will I be able to have access to the information gathered about my child?
- What benefits might be available to my child if she participates? (Sometimes experimental medications or treatments are provided.)
- What are the risks associated with my child’s participation, if any? Could any harm potentially come?
- Is there another parent with whom I can speak whose child is currently participating?
- Is my child able to understand how his participation will help others? Is he old enough to decide for himself? Or will this only be added pain, confusion, and trauma for him?
- Can my schedule and stress-level handle the additional doctor visits or medical treatments required in the study?
- What is my gut feeling? Does my instinct tell me that this is something our family should take part in?
- How does my child’s other parent feel about the study?
The thought that my boys might be able to potentially help other children, or even themselves, makes me generally feel positive about their participation in studies. However, I’m not going to allow my boys lives to be filled with added complications and frustration unnecessarily. Fortunately, I think that most JD studies involve a simple blood-draw and follow-up. But some studies for other diseases and disorders are much more invasive. As a parent, you have the right to simply say “no.” You can even say “no” in the middle of the study, if things become unbearable.
I believe that helping those who may follow in our footsteps is a worthy thing. Yet ultimately, you know what is best in your child’s case. Trust your own judgment, and be informed every step of the way.
Do you have a child who has been involved in medical research? What were your experiences?
Kristyn Crow is the author of this blog. Visit her website by clicking here.