Data Policy
This policy was created to balance the rights and privacy of individuals, with the benefit to the
whole
community of gathering information for their research projects. We have tried to ensure the safety
and
privacy of any personal data, including data likely to have significant medical relevance, or which
can
identify a specific person. At the same time, we have tried to retain enough information that test
results
are useful for research, meaningful for close matches and can be cross-referenced against
information on
other sites.
-
The following is the Policy agreed to on upload of data, between Submitters of that data
(genetic
testers or their designated proxies) and the Project. The Project is defined as those persons
with
administrative access to the data archive, or successors thereof.
- Submitters give the Project free license to analyse the genetic and ancestral data they submit,
and
publicly release semi-anonymized, filtered analyses of that data, and any associated meta-data
found
in the public domain. Released genetic data is to be limited to calls assigned to the
Y-chromosome.
- Raw DNA sequencing data (e.g. BAM or FASTQ datasets) will only be shared with a member's
explicit
written consent. However, reduced sets of Y-chromosome data (including calls in VCF/gVCF format,
test
coverage information in BED format, and submitted meta-data) may be shared with co-operating
projects.
- Tests are publicly identified by the meta-data supplied on submission, i.e. kit numbers and
most-distant
known paternal ancestor information. Project members may request that public reports anonymize
all or
part of this information to an internal project identifier instead. Such requests should be made
by
e-mail before submission to prevent public release of information.
- Submitters or legal data owners have the right to request that their raw data is removed from
the data
analysis at any time. However, since we release a reduced set of data into the public domain, we
cannot
guarantee these data are removed from external sites once the kit has been analyzed.
-
The Project may contact Submitters about specific queries regarding their data, using the e-mail
address
supplied on submission. Sharing of e-mail addresses with any third parties will only be done
with
Submitters' consent.
-
Minor updates to this agreement may be necessary, e.g. to modify or make explicit the names of
people
and parties; to include new data formats; to clarify specific points of ambiguity; or to ensure
compliance with national and international law, existing privacy agreements with testing
companies,
or community guidelines. Such changes may me made by the Project without notification, provided
they
don't constitute material infringements of the rights and/or privacy granted to Submitters, as
described
in the version of the Policy they initially accept.
As of 19 October 2017, the list of project administrators is:
James Kane (www.haplogroup-r.org),
Alex Williamson (www.ytree.net),
Iain McDonald (www.jb.man.ac.uk/~mcdonald/genetics.html), and Jef Treece (data analyst).