By signing up for openSNP you declare that you have understood the
possible risks and side-effects that can occur by making your genetical and
medical information available on this platform. In short:
-
Data uploaded to the internet can not be fully deleted;
there may always be a backup somewhere
-
By publishing data, you expose information about you and your next of kin
worldwide
-
Genetic and medical information can be used by employers, insurance
companies, and the government to know more about you than you would like
- new findings about your genotypes can be negative
What has been seen cannot be unseen
You agree that all data you upload to openSNP will be freely available
online (well, except your mail-address and password) under
a Creative Commons Zero
license. The data can be viewed and downloaded through this webpage,
RSS-feeds, and, in the future, perhaps via an API or FTP.
Although you can delete your data from openSNP, this does not guarantee that
someone else has not already created a backup of the data (who may
re-publish the data somewhere else).
There is zero privacy anyway, get over it
Although you can upload your data using a pseudonym, there is no way to
anonymously submit data. Statistically speaking, it is really unlikely that
your medical and genetic information matches that of someone else.
By uploading, you do not only disclose information about yourself but also
about your next kinship (parents and siblings), who share half of a genome
with you. Before uploading any genetical data, you should make sure that
those people approve of you doing so. This is especially
important if you have a monozygotic twin, who shares all of your genome!
Jobs, insurance, the government
Medical and genetic data can be used to discriminate against people.
Due to medical or genetic information, an employer may not give you a job,
an insurance company may request higher payments, and who knows
what any evil™ government will do with your data?
Although some countries have laws against genetic discrimination,
these laws certainly will not cover all possible discrimination scenarios
and could change in the future. Again: these are side effects and risks
which also can apply to your kinship if you chose to upload this information.
Knowledge about genes and SNPs is not static
Nearly every week there are new scientific publications that find new
associations between certain traits (like diseases) with existing genetic
information. Because of this, you should not publish your data just because
it currently looks harmless and unsuspicious. It may be true that your
genotyping data is of no great interest to your employer, your insurance
company, or the government right now, but this can easily change
(Remember: one of the reasons to upload your data here in the first
place is to enable everyone to find such new associations).
Think of the hypothetical
SNP rs666.
One day after you upload your genotyping-data to this website, a new
publication finds that your genotype at rs666 will give you, your
siblings and your parents a fatal disease that will most certainly strike
all of you. Due to this disease you (and you kin) may lose your jobs and
your insurance. Chances for an association of this kind may be small,
but by uploading the data you are nonetheless taking this risk!
Account housekeeping
Accounts which only serve advertising will be deleted.
Accounts which are uploading faked data or data copied from other user
accounts will be deleted.
We reserve the right to delete accounts for other operational reasons.
Who is behind all of this?
openSNP is a community-driven and community-owned project that is run by
individuals and is not attached to any institution.
Learn more about this on our About Us page.