Table 5.

Lessons learned by the Colon CFR

If we were to start a new genetic family study, we would try to ensure that…

1. Researchers develop a plan for disclosing (or justify withholding) genetic information that impacts on medical management at the outset of the study, including

(a) In the IRB (or ethics) application

(b) In the informed consent form

(c) The cost in the funding application

(d) Resolving the issue of diagnostic accredited laboratory confirmation

(e) Develop a plan to monitor scientific progress

2. Respect the individual autonomy of each family member. Inform participants in more detail, including

(a) the difference between research results and clinic results

(b) the difference between a researcher and a clinician

(c) the meaning of not receiving any genetic results

(d) an outline of the process for offering results

3. Involve key stakeholders at all stages of research, for example

(a) Potential participants

(b) Health care providers (i.e., physicians, genetic counselors, nurses)

(c) consumer representatives

(d) government agencies