Exploratory Data Analysis for Disease Pedigrees and Cancer Genetics

Inclusion Criteria

- INCLUSION/EXCLUSION CRITERIA:

User Requests:

When receiving data sets for problem reports and/or new feature requests, all data sets
would be accepted. We would not consider how the data were collected. The reasons for this
are: the medical aspects of the data set are irrelevant to the reason we receiving the
data; we cannot respond promptly to problem reports, if we have to get details on how the
data were collected; the data are never used by us for any research into the traits being
studies by the researchers who collected data.

Collaborations:

For collaborative studies, we would request details of how the data were collected,
including evidence of approval by a local ethics board. We would submit to the NHGRI IRB
an amendment describing the new collaboration. That amendment would necessarily include a
formal indication that the collaborating research group has permission to collect and
analyze the human data that they present to us (in coded and summarized format). For
collaborators in the United States that permission would consist of an IRB-approved
protocol or exemption from the collaborator's institution. For collaborators outside the
United States the permission would be one of the types of agreements currently supported
by the NIH Office of Human Subjects Research.

If we do not see evidence of appropriate permission to collect the data or the IRB turns
down our proposed amendment, then we would exclude ourselves from participating in the
proposed collaboration.

There are two other circumstances under which we have also excluded collaborating on
analysis of data sets in the past and may do so in the future. One circumstance was where
we did not feel that the proposed data set could possibly give sufficient statistical
power to detect anything interesting. The other circumstance was where we had an existing
collaboration with one research group, and a competing group asked us to collaborate also.