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Questions to Consider in Decision Making Around Genetics Testing

 

Source: Native American Cancer Initiatives, Incorporated, Genetics Education for Native Americans (GENA)®, excerpt from GENA objective 13

 

You should know answers to these questions before you make a choice whether or not to take part in genetic research.

Yes

No

Don't Know / Need to find out

1.

Who funds the genetic research (e.g., government agency, business, non-profit organization)?

 

 

 

2.

Does your tribe, urban Indian center/clinic, or local IHS facilities have a policy about you taking part in genetic research?

 

 

 

3.

Has the Tribal, Indian Health Board, and / or IHS IRB approved the genetic study?

 

 

 

4.

Who receives the results from this study?

 

 

 

5.

How are you guaranteed that only those people / sources received the information?

 

 

 

6.

Who has access to records that contain information about your participation in the research study?

 

 

 

 

6a.  Will this person have permission to share your information with anyone?

 

 

 

7.

How do you benefit from participating in the genetic research study?  Quite often you will not personally benefit and this is stated in the informed consent.

 

 

 

8.

How does your family (i.e., children and siblings) benefit from you participating in the study?

 

 

 

9.

How might participating harm you?

 

 

 

10.

How might your family (i.e., children and siblings) be harmed by your participation?

 

 

 

11.

How might your tribal community be harmed by your participation?

 

 

 

12.

Who pays for the costs of the genetic research?

 

 

 

13.

Are there any additional costs that could be added on later?

 

 

 

 

13a.  If so, what types of costs are those?  Who agrees to pay for those costs?

 

 

 

14.

Who provides genetic counseling following the research to help you and your family understand the results?

 

 

 

 

14a. What are their qualifications (e.g., were they trained to be a genetic counselor specifically or did they only have a few classes while in medical / nursing school)?

 

 

 

 

14b. Is the genetic counselor someone other than your regular physician or nurse?

 

 

 

15.

Are you provided free genetic counseling if the study results are positive? What if the study results are negative?

 

 

 

16.

What does this genetic research actually find?

 

 

 

17.

How accurate are the genetic tests for this mutation / SNP?

 

 

 

18.

Is your name and other personal identification linked with your study results, or is there an anonymous numbered code to protect your privacy?

 

 

 

19.

If your insurance company, your employer, or other family members demand the research study results information specifically about you, can you and the genetic research study personnel refuse to release the results to them?

 

 

 

20.

What other information do you want or need?

 

 

 

How Do We Decide?

A Guide for American Indian/Alaska Native Communities

The interactive decision guides provide a set of interactive questions to help you reflect on your feelings regarding research. Read More