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Terms
& Conditions for Genome Scanning Provided by TruGenetics™
Introduction
Before you can proceed to obtain a genome
scan from TruGenetics™, and use the services provided
by TruGenetics™, we would like you to understand the
potential consequences of knowing the genetic information
that you will obtain, how your genetic information will
be protected by TruGenetics™, Inc. and how your genetic
information might be used by you and TruGenetics™,
Inc. in the future.
The TruGenetics™
Process
There are four major steps to this process.
First, you must read through this document and register
for a unique TruGenetics™ account. Second, you will
be asked to fill out a detailed online questionnaire that
will help us gather important information that will not
only help us provide you with a personalized interpretation
of your genetic information, but also help us conduct genetic
research. This questionnaire will ask you about personal
information, including that related to traits and health
history. Third, after this questionnaire is completed, we
will send you a sputum collection kit through the mail,
labeled with your unique TruGenetics™ identifier number.
Once we receive your sputum through the mail, we will extract
DNA from your sputum and perform a genome scan using state
of the art technology. Finally, when your genetic information
is ready for you, we will notify you to sign in to your
unique TruGenetics™ account, within which you will
be able to privately review and explore your genetic information.
The Genetic Information
The genetic information we will provide
you will be in the form of genotypes for over 500,000 SNPs,
genetic markers, in your genome. This represents a small
percentage of the overall genetic information contained
in your genome and does not completely represent your genome.
However, scientists have figured out how to efficiently
select these SNPs so that these genotypes can provide significant
amount of information about your genome. Many genetic studies
have been able to use SNPs to identify regions of the genome
that are associated with the development of a trait or disease.
Interpretation of the genetic information
we provide you is not complete. The field of genetic research
is advancing rapidly. What we know about genetics today
will likely be different in the near future. As mentioned
above, only a very small percentage of the genetic information
we will provide you is known to be associated with certain
traits or diseases. As part of your willingness to participate
in our discovery effort described below, we will provide
you with updates of the latest genetic discoveries based
upon your genome scan. We may also periodically ask you
to complete additional questionnaires to help us interpret
your genetic information in light of new genetic discoveries.
The genome scanning process is excellent,
but not perfect. All of our genotyping will be performed
in a CLIA certified laboratory using the most strict criteria
for genotyping accuracy. Our process ensures that on average,
99% of the data we obtain from a genome scan will be accurate
and usable. However, this means that 1% of the time, or
approximately 5,000 genotypes if 500,000 SNPs are evaluated,
will not be useable. Therefore, it is possible we may not
be able to provide your genotype for some of the listed
traits and diseases.
The genetic information available to you is
not intended for personal disease risk prediction. This
is because the current state of genetic research indicates
that while the genotypes that we provide have been found
to be associated with development of certain traits or diseases,
not enough is known to accurately predict an individual’s
risk based upon their genotype.
The genetic information provided to you does
not provide a medical diagnosis. Although we will identify
over 500,000 genotypes for you, only a very small percentage
of them have been found to be associated with certain traits
or diseases. Based upon the current state of scientific
knowledge, these genotypes cannot accurately tell you whether
you have a trait or disease. Although these genotypes have
been found to be associated with higher odds of having a
trait or disease, there are many other variables from the
environment that you live in that can also influences these
odds.
The genetic information available to you is
not a medical test and is not intended for medical decision-making,
including family planning decisions. The genetic information
that we will provide you should be treated as informal information
about your genome for your own personal use. If you are
interested in making medical decisions or significant lifestyle
changes based upon genetic testing, you should discuss this
with your healthcare provider and if appropriate, obtain
a certified genetic test through your healthcare provider.
Risks
You may not anticipate the effect of
knowing some types of genetic information. As part of this
process, you will have access to genetic information that
may lead to an emotional response or trouble you. For instance,
you may learn some unanticipated information about yourself
or a family member. This may have social, legal, or economic
implications that you cannot anticipate at this time. Although
we will give you the opportunity to review all of your genetic
information, you will also be able to choose to not review
certain genetic information until you are ready. We will
also offer genetic counseling services that can help you
better understand the implications of the genetic information.
You should be careful about sharing your genetic
information. Although genetic data is not widely used by
businesses and insurance companies at this time, this may
change in the future and you should be very careful about
who you share your genetic information with. You should
also be careful about sharing of your genetic information
with friends and family members. This may lead to conflicts
or evoke strong emotional reactions and result in unforeseen
consequences that may not be in your best interest.
Interpretation of your genetic information
may change. As indicated above, the genetic field is moving
rapidly, with new discoveries every day. It is possible
that our understanding of certain genetic information may
change in the future, and the interpretation of the genetic
information today may be different in the future. This is
why we do not recommend that any medical actions are taken
based upon the information we provide. TruGenetics™
will do its best to provide updated genetic information
to all of its users. However, we cannot guarantee that our
interpretation of the genetic information will be the most
up-to-date at all times.
Privacy & Protection
Your account information, questionnaire
responses, and genetic information will be kept in a secured
protected database. Upon registering with TruGenetics™,
you will be assigned a unique identifier. Any time your
information is used, we will only refer to this unique identifier.
The only way to trace this information to you is through
the unique TruGenetics™ identifier number, which will
only be accessible by the database managers at TruGenetics™.
All of your genetic information are encrypted
and secured for your protection. We use the same encryption
as Banks and other financial companies. So, the information
will be maximally protected from unauthorized access.
Access to your information will be limited.
Your contact and payment information will not be disclosed
to anyone outside of TruGenetics™.
However, there may be extremes circumstances under which
we will be legally required to release this information.
If this should occur, we will do our best to notify you
before providing your information to outside parties, unless
prohibited by law.
You may authorize the release of your genetic
information. In the event that you are interested in releasing
your genetic information to another party, such as your
physician, we will require that you provide this authorization
in writing to document your approval of release of genetic
information. As part of this authorization, we will require
you answer questions that only you will know the answers
to. These questions and answers will be established at the
time of your registration. Once this documentation is provided,
we will facilitate the transfer of your information to the
indicated party. A fee may be required for this transfer.
The Genetic Information Nondiscrimination
Act (GINA). The President of the United States signed GINA
into law on May 21, 2008. This Act prohibits discrimination
on the basis of genetic information with respect to health
insurance and employment. This law prohibits American insurance
companies and health plans (including both group and individual
insurers, as well as federally-regulated plans) from evaluating
your genetic information before you are considered for healthcare
coverage, request or require that you undergo genetic testing
before being considered for healthcare coverage, deny healthcare
coverage based upon genetic information, or use genetic
information to determine the extent or cost of healthcare
coverage. This bill also prevents any U.S. employer from
using genetic information to determine who they hire or
the salary, request or require that you undergo genetic
testing before being hired, or disclose your genetic information
except under specific and specially controlled circumstances.
Research
Your questionnaire responses and genetic
information will be used for genetic research. One of the
main goals of TruGenetics™ is to develop a unique
research database for conducting genetic studies. Your decision
to use TruGenetics’™ services indicates that
you are willing to contribute your questionnaire responses
and genetic information to the TruGenetics™ research
database. This research database will be free of any information
that can be used to trace this data to you. All of the data
in the research database will be anonymized and analyzed
in aggregate (as a group) so that no single individual can
be identified through the research database. TruGenetics™
may conduct this research, or may partner with another organization,
including non-profit and commercial entities, to conduct
research. TruGenetics™ may charge a fee for conducting
research using this database. This research may lead to
publications that reveal the findings. These publications
will not contain any information that can be used to identify
you.
You will not benefit directly from contributing
your information to the research database. However, important
discoveries might be made through this research, and this
might significantly help other people. If these discoveries
are validated and accepted by the scientific community,
we will provide you with this information as it pertains
to your genes. This research may also lead to the development
of a commercial product. You will not receive any payments
if this occurs.
Withdrawal
You have the right to remove your account
and all of your genetic information from TruGenetics™
at any time. This must be done with a written request documenting
this intention. Within thirty days of receiving this documentation,
we will remove all of your contact and payment information,
your questionnaire responses, and your genetic information
from our records. This information will no longer be retrievable
by you or anyone else in the future. This information will
not be included in any future research. If using your information
was included in research \ conducted or initiated prior
to receiving this documentation, that research will not
be altered.
In summary, by participating in this process,
you are agreeing to the following:
- You are eighteen years of age or older
- You are guaranteeing that the saliva specimen
you are providing is from you, and no one else.
- You are not from an insurance company
or an employer trying to obtain information about another
person.
- You give TruGenetics™
permission to manage and use your information according
to the terms as described above.
- You yourself will not copy, modify, create
a derivative work of, reverse engineer, decompile, or
otherwise attempt to extract the source code of TruGenetics’™
proprietary software or any part there of.
- You agree that this Consent and Legal
Agreement will be governed exclusively by the laws of
the State of Washington, and that any disputes arising
from this Consent and Legal Agreement will be resolved
by binding arbitration in Seattle, Washington under the
Rules of the American Arbitration Association.
- You will hold harmless TruGenetics™,
its employees, contractors, successors, and assigns from
any liability arising out of the use or disclosure of
any information that is obtained from genotyping your
saliva sample, that is disclosed to you consistent with
our privacy statement and resulting from any third-party
add-ons to tools we provide.
- You understand that your genetic or other
contributed personal information may be provided to third
parties-whether individuals to whom you facilitate access,
intentionally or inadvertently, or to third parties for
diagnostic or other purposes-you agree to hold harmless
TruGenetics™, its employees,
contractors, successors, and assigns from any and all
liability arising from such disclosure or use of your
genetic or other contributed personal data. The terms
of service above provides a complete understanding of
terms applicable to our services.
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