openSNP/snpr

<p><strong>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:</strong>
  <br/><br/>
</p>
<p>
<ul>
  <li>
    Data uploaded to the internet can not be fully deleted;
    there may always be a backup somewhere
  </li>
  <li>
    By publishing data, you expose information about you and your next of kin
    worldwide
  </li>
  <li>
    Genetic and medical information can be used by employers, insurance
    companies, and the government to know more about you than you would like
  </li>
  <li>new findings about your genotypes can be negative</li>
</ul>
</p>
<center><h6>What has been seen cannot be unseen</h6></center>
<p>
  You agree that all data you upload to openSNP will be freely available
  online (well, except your mail-address and password) under
  a <a href="http://creativecommons.org/about/cc0">Creative Commons Zero</a>
  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).
</p>
<center><h6>There is zero privacy anyway, get over it</h6></center>
<p>
  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!
</p>
<center><h6>Jobs, insurance, the government</h6></center>
<p>
  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 <em>evil™</em> 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.
</p>
<center><h6>Knowledge about genes and SNPs is not static</h6></center>
<p>
  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
  (<strong>Remember: one of the reasons to upload your data here in the first
    place is to enable everyone to find such new associations</strong>).
  </p>
  <p>Think of the hypothetical
    <em><a href="http://www.snpedia.com/index.php/Rs666">SNP rs666</a></em>.
    One day after you upload your genotyping-data to this website, a new
    publication finds that your genotype at <em>rs666</em> 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!
  </p>
<center><h6>Account housekeeping</h6></center>
<p>
  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.
</p>
<center><h6>Who is behind all of this?</h6></center>
<p>
  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 <a href="/about-us">About Us page</a>.
</p>