Privacy Notice for Future Genetics Limited Website Users
Version 1. Dated 13 Dec. 18
1.
About us
We are Future
Genetics Limited; a precision medicine research company, based in the UK, whose
focus is simply the patient. We are focused on the discovery and development of
disease biomarkers in areas of unmet clinical need.
2.
Introduction and purpose of this Privacy Notice
This Privacy Notice details key information that it is critical for you
to know when you provide your personal information to Future Genetics Limited.
This document explains what to expect when Future
Genetics Limited is provided information from you, when you visit our website. This
privacy policy does not apply to participants involved in our clinical trials.
At Future Genetics, we control your data in
relation to your personal data and this Privacy Notice describes how we process
it. Processing your data can mean collecting, organising, storing and
destroying it. We will always make sure your personal data is protected and we
will ensure that your data will be processed:
3.
Our right to change our Privacy Notice
We may make changes to our Privacy Notice. You will be notified of our
updated version when we post our changed Privacy Notice on the Future Genetics
Limited website. After which it will then apply and supersede this version. We
will always put the date and version of our Privacy Notice at the top, so that
you can easily find this information. We will also keep previous versions of
our Privacy Notice, in the case that you want to refer to them.
4.
What is personal data?
Personal data is
any information about a living individual that can be used to identify the
individual, such as name, address, date of birth, email address, username, NHS
number and NHS GP Surgery.
5.
What information we collect
When you register
to access materials related to our clinical trials we collect the following
personal data when you provide it to a Future Genetics Researcher, such as:
- Name and title
- Username
- Address
- Email address
- NHS GP Surgery
- NHS number
- Date of birth
6.
Your personal data and how we process it
At Future Genetics, we will only use your personal data lawfully and
when you have given us your informed consent to the processing of it. Your
personal data will most commonly be used;
- To send you regular articles written by Future Genetics Research
Scientists (if you have signed up)
- To allow you to register to participate in our Clinical Trials
- Verify your identity and registration details by contacting third
parties.
- To allow access to Future Genetics Clinical Trial private and
confidential information.
You may withdraw your registration at any time by
contacting us at info@futuregenetics.co.uk. Upon your request
and confirmation, your application to register will be deleted.
Future Genetics
will never sell of share your personal information with third parties who may
use it for their own purposes. However, if you are registered to our clinical
trials, your identity may be used when researchers contact organisations to
request data.
7.
How we protect your personal data
Your security and
privacy are very important to us. Only authorised researchers will have
access to your personal data. All identifiable data held by the authorised
researchers will be treated as private and confidential. All data for research
analysis will be de-identified. The purpose of de-identifying data is to
protect the identity of the participants.
8.
How long we keep your personal data
We will only retain
your personal data for as long as necessary or permitted to fulfil the purposes
we collected it for.
9.
Your rights and your personal data
Under certain circumstances, by law you have rights with respect of your
personal data. These include the below rights:
Should you want to
submit a request to obtain, correct, restrict processing of, or erase personal
data, let us know by emailing info@futuregenetics.co.uk or writing to Future Genetics (address listed
below).
For more information
on your rights relating to personal data please visit the Information
Commissioner’s website.
Complaints
In the unfortunate event that you feel we have not handled your personal
data in a lawful manner, please contact our Data Protection Officer at dpo@futuregenetics.co.uk. If you would like to make a complaint, then in
the first instance please approach Future Genetics. The Senior Manager will
take responsibility to resolve the matter. However if you feel you are unhappy
with the resolution and feel the issue has not been resolved, your complaint
will be escalated to the CEO of Future Genetics. You also have the right to
contact the Information Commissioner’s Office, which is the UK's independent
body set up to uphold information rights. (address listed below).
You can contact the Future Genetics DPO at :
Future Genetics Limited
Birmingham Research Park
97 Vincent Drive
Birmingham
B15 2SQ
Tel: 0121 667 3007
You can contact the Information Commissioner’s Office at:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 0303 123 1113
You can also contact us about your complaint here
Contact details and useful information
If you have any queries
about this Privacy Notice or how we handle/process your personal data then
please feel free to contact our Data Protection Officer at dpo@futuregenetics.co.uk.
Privacy Notice for Participants in the Empower®-1Study
Version 1. Dated 13 Dec. 18
1.
Introduction
This Privacy Notice
explains how Future Genetics Limited (Future Genetics) collect, store and
process the personal information provided by you as a Participant in the
Empower®-1Study, which is in accordance with the General Data Protection
Regulation (GDPR).
At Future Genetics Limited we prioritise the
participant’s privacy and confidentiality. Future Genetics Limited will only
use your personal information for the benefits of research analysis.
Regardless of whether a person decides take part or not, the treatment and care
that persons receives will not be affected. As a Participant you have been generous
enough to volunteer for the Empower®-1Study and you will have been referred for
inclusion in the Empower®-1Study by your clinician as you may have generally
good health or have one of the disease conditions that Future Genetics Limited
are investigating. Regardless of the way in which you have been referred, you
will have given your consent to providing your personal information by completing
and signing a consent form, after being informed of all the relevant
information required related to the clinical trial.
Future Genetics
Limited want you to be clear about how we collect, store and use personal
information about you, how we protect the privacy of your personal information
and how you can access your personal information should you choose to do so.
Your privacy is a primary concern at Future
Genetics Limited. If you have any queries or questions about this Privacy
Notice then please contact our Data Protection Officer at dpo@futuregenetics.co.uk.
2.
Information we collect, store and process about you
Within the duration
of the clinical trial, we will collect, store and process your personal
information. This information may include your medical records from your GP
Surgeries, as well as biological samples, such as blood, urine or saliva (if
necessary).
3.
Why is this information collected
By taking into
account your personal data, medical records and DNA together, Future Genetics Researchers will be
able to try and discover parts of human DNA that can either help people stay
healthy or, in some cases, increase the risk of other people developing
illnesses or diseases. The information gathered from this research study may
help us improve healthcare of the UK population and beyond.
4.
What type of data is collected
As part of the Study, you may provide personal
information about yourself and your condition to the Future Genetics Research
Scientists situated at your local/appointed NHS site. This may include personal information, like your name, email
address, date of birth and NHS number. You may also be asked to complete a
number of questionnaires based on your general well-being or your condition,
providing details about your condition and how it affects you.
5.
Where is data collected from
Some of your health
data will come from NHS hospitals and GPs or other health care teams that have
provided you with care at any time; other health data will come from NHS healthcare
organisations (such as NHS Digital, NHS England and Public Health England) that
will either provide care in the future or support organisations that provide
that care.
Samples that are given may be used for the Empower®-1 research study or
other future approved research studies by Future Genetics. Studies that will
look at the whole DNA as well as other genetic and non-genetic material found
in the samples. De-identified samples may be sent to collaborators and
specialist service providers in the UK and abroad, that produce scientific and
medical data that supports the research studies carried out by Future Genetics.
6.
Keeping data private
Future Genetics
Research Scientists will have restricted access to de-identified data which
contain only the information they need for their specific and approved research
study. From this information they may produce additional research data
based on their analysis. Researchers should not be able to identify
the participant by this data, in fact they will not know who is participating
in the Study. The only will only have access to what they need in order to
carry out the analysis. To prevent the unfortunate circumstance that a piece of
non-trivial information is exposed and can be traced back to the identity of
the participant, Future Genetics insists all access to its data takes place
within their secure environment. Here, it can be monitored closely by
authorised company employees only.
7.
Withdrawing participation from the Empower®-1Study
At any point, if a
participant wants to withdraw from the Empower®-1Study then they are free to do
so, and this will be put into action as soon as possible, whilst ensuring the
process is easy to complete. You will be give three options concerning your
information:
Option 1: No new
samples collected, but medical records are updated.
Option 2: New
samples collected, but medical records not updated.
Option 3: No new
samples collected and medical records not updated.
We will have a
record to say you were part of the study and then withdrew. This will be
kept in the Future Genetics Audit Log.
8.
Children in the Empower®-1Study
Children aged 6 to
15 will receive an assent form if a child and a person(s) with parental
responsibility has agreed to the child’s participation in the Empower-1
Research Study. When participants in the Empower®-1Study reach the age of 16
they will be considered an adult and will be given the opportunity to prove
their informed consent as an adult. They will be contacted by the Future
Genetics Team to carry this out.
9.
Information that is captured when we are contacted
You can contact
Future Genetics by email, phone or write to us (address listed below). Upon
contact, we may keep a record of your details to help us to provide the
appropriate resolution or answers to any queries or questions you may have. This
will be kept in our records for the purpose of contacting you again if you have
any concerns or comments in the future. However, this information will not be
used for any other purposes.
We may contact you
to keep you informed about the Empower®-1Study or to discuss future clinical
trials that may be of interest to you. We may use your email address
provided to do this, if you prefer and consent. Please inform us of your
preference and whether or not you would like to be informed.
10.
Accessing and updating your personal information
In accordance with
the GDPR, you have the right to access your personal information. You also have
the right to update/rectify your information, have it erased, or restrict or
object to its processing. With regards to these rights, there are some
exceptions, which include information that is processed for research purposes.
Future Genetics
aims to ensure we have the most accurate data and up to date information. We
understand that this may not always be the case and mistakes can be made.
Therefore, if any information is incorrect, we will give you the opportunity to
change/update/delete your details as quickly as possible. You will have access
to your account details on the My Account page which appears as you log
in. You will be able to change details, such as; Your name, email address,
password to your account and you will also be able to delete/disable your
account. This will remove your ability to access trial information.
There may also be
situations where we may reject requests to register that we believe are
unreasonably repetitive, ingenuine or risk the privacy of others. Users that
are rejected and want to discuss further can contact us on info@futuregenetics.co.uk.
All data provided
to Future Genetics will be backed up to ensure its security. This proves
valuable in protecting the data from accidental or malicious destruction. If
you request for us to delete your information, we will do so, back-up copies
will also be deleted as soon as practically possible.
11.
Information security and period of storage
We aim to protect
your data from all unauthorised access which could result in unauthorised
alterations/disclosure/ deletion/ destruction. To prevent these circumstances:
- All data possessed is encrypted
- Access to all confidential information/data is controlled closely.
- Only company employees who require to see your personal information will
be allowed access, otherwise access is highly restricted,
- Any company employees or third-party organisations that require to
access this information will be obliged to be subject to contractual
confidentiality obligations. If they breach this contract or fail to meet
obligations, they will be disciplined.
- Information that is collected, stored and processed is continuously
monitored and reviewed.
- All user activity including that of our Researchers is tracked and
logged.
12.
Changes
We may make changes
to our Privacy Notice. You will be notified of our updated version when we post
our changed Privacy Notice on the Future Genetics Limited website. After which it
will then apply and supersede this version. We will always put the date and
version of our Privacy Notice at the top, so that you can easily find this
information. We will also keep previous versions of our Privacy Notice, in the
case that you want to refer to them.
Contact
details and useful information
The address of Future
Genetics Limited is:
Birmingham Research Park
97 Vincent Drive
Birmingham
B15 2SQ
0121 667 3007
For general enquires our contact details can be
found on our Contact us page.
Complaints
In the unfortunate event that you feel we have not handled your personal
data in a lawful manner, please contact our Data Protection Officer at dpo@futuregenetics.co.uk. If you would like to make a complaint, then in
the first instance please approach Future Genetics. The Senior Manager will
take responsibility to resolve the matter. However, if you feel you are unhappy
with the resolution and feel the issue has not been resolved, your complaint will
be escalated to the CEO of Future Genetics. You also have the right to contact
the Information Commissioner’s Office, which is the UK's independent body set
up to uphold information rights. (address listed below).
You can contact the Future Genetics DPO at :
Future Genetics Limited
Birmingham Research Park
97 Vincent Drive
Birmingham
B15 2SQ
Tel: 0121 667 3007
You can contact the Information Commissioner’s Office at:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 0303 123 1113
You can also contact us about your
complaint here
