AMotherCares

IF YOU ARE ASKED TO PARTICIPATE
IN
THE NATIONAL CHILDREN'S STUDY

Before participating in any study, particularly a genetic study like the National Children's Study that states as its aim, discovering a correlation between environmental influences and genetic constitution, an understanding of what exactly will be occurring to you and your family is a must to assure the correct decisions can be made for you and the family.

I am a mother and I know how anxious I become when my daughters come down with some ailment, especially if I determine I need to take them to receive medical attention. When confronted by physicians who give you facts and state how treatment should proceed, delivering all statements with such authority, our first reactions are most often of acceptance and an assumption that 'doctor knows best'.

I know that I have sometimes become overwhelmed at the point of initial contact with health care providers and felt unprepared to ask key questions or only thought of them as I headed out of the office.

I have completed a list of questions I thought of as I was compiling information about the National Children's Study that I would like to share. Obviously, these are by no means the only questions of importance. These are the best inquiries I could think of at this point in time.

I suggest when approached by any entity, hospital/clinic/doctor's office, day care worker, door to door representatives, in addition to whatever questions and concerns you raise, please consider including these among your questions.

1)What precisely will my family and I be required to do during this study? How long will my family be required to participate?

2)What type of equipment/supplies will be used in my home?

3)Will there be prescheduled visits?

4)Will there be unannounced visits?

5)Ask what the study hopes to find out, exactly what is being studied. During the formation of any study, there are core premises/questions to which there is a desire to find answers. Ask for a copy of those cores questions.

6)Will journals pertaining to the household and its members be compiled?

7)Who will be reviewing all this information?

8)Will all data become part of a permanent database?

9)If a database is maintained containing this information, how long will this information be kept online?

10)What rights of refusal do I, myself and my family, have to submitting particular information during this study?

11)Will any form of experimental/investigational therapies/treatments or vaccines be offered during this study?

12)If it is discovered that my child or family member has a previously undiagnosed disease or ailment, what will be the procedure for treatment?

13)Will there be any case when treatment may be denied, in the interest of collecting scientific data for review?

14)If or when any possible genetic results reveal the possibility of traits for disease or health concerns, will there be circumstances when this knowledge may be withheld from me or my family?

In conclusion, I have a few additional words of advice. Don't be afraid to ask questions. A humble demeanor, during this age of technological experimentation, is not a safe posture to assume. Be self confident and assured when you confront physicians/health care professionals. Take a note pad with you to write down responses to questions asked.

If ever a response is in a form of, “I don't know” or “At this time, that hasn't been decided” or “That's a good question” or “I'll have to get back to you” then, I suggest a response in the nature of, “Well, when you get back to me and have answers to these questions, I'll get back to you.”

One last point, be mindful that 'informed consent' is meant as a means to protect the experimenter, not the study participant. Therefore, when asked to sign any type of waiver, make sure you understand the language and exactly what it is this waiver is eliminating as options available to you, as the study participant, which by your signature, you are being asked to sign away.

I hope you find these questions and suggestions useful. For more information, e mail inquiries to:

amothercares@yahoo.com