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The Adelphi Genetics Forum Privacy Statement

The Adelphi Genetics Forum is committed to protecting the privacy of all people who we hold information on (referred to as data subjects).

The following statement outlines how we use and protect your information and who to contact if you have any issues or queries regarding our Privacy Statement. This statement is fully compliant with UK GDPR/DPA 2018 and all data privacy/protection legislation and ensures we conform to all European laws as the “data controller” of the information you provide to us.

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How we collect your information

We collect your personal information when you interact with us or use our services. We also look at how visitors use our website. We use this information to help us improve our services and optimise customer experience.

We collect information:

  • when you contact us directly via email, phone, post, message, via our social media chat functions;
  • when you complete booking, referral, enquiry, application, evaluation forms (online and hard copy) for The Adelphi Genetics Forum services;
  • when you browse and use our website (see cookie policy which is displayed when you visit our website);
  • when your personal information is passed on to us (with your consent) from authorised third-parties.

Information that we collect from you

As part of our commitment to the privacy of our data subjects and visitors to our website, we want to be clear about the sorts of information we will collect from you.

When you contact us directly (or your personal information is passed on to us from authorised third parties), you (or the authorised third party) are asked to provide information about yourself which includes your name, contact details, address, detail of enquiry (which may include background information, including date of birth, marital status, gender, sexual orientation – special category data, ethnicity – special category data) and if applicable payment information such as credit or debit card information.

We also collect information about your usage of our website (and/or social media platforms) and information about you from any messages you post to our website (and/or social media platforms) or when you contact us or provide us with feedback, including via e-mail, letter, phone or chat function. If you contact us by phone, we record voicemails (and retain until your enquiry has been completed), and may make notes in relation to your call.


Use of your information

We will only process the data we collect about you where there is a legal basis to do so, and if that reason is permitted under data protection law. We will have a lawful basis for processing your information:

  • if we need to process your information in order to provide you with the service you have requested or to enter into a contract;
  • if we have your consent;
  • if we have a legitimate reason for processing your data; or
  • if we are under a legal obligation to do so.

Where we need to, in order to provide you with the service you have requested or to enter into a contract, we use your information:

  • to enable us to provide you with access to relevant documentation and information;
  • to supply the services you have requested;
  • to enable us to collect payment from you; and
  • to contact you where necessary concerning our services, such as to resolve issues you may have with the service you have received from The Adelphi Genetics Forum

We also process your data where we have a legitimate reason for doing so – for example personalisation of our services, including processing data to make it easier and faster for you to find out about and access The Adelphi Genetics Forum services. We have listed these reasons below:

  • to improve the effectiveness and quality of service that our service users can expect from us in the future;
  • to enable our support services team to help you with any enquiries or complaints in the most efficient way possible;
  • to contact you for your views and feedback on our services and to notify you if there are any important changes or developments to our website or our services, including letting you know that our services are operating in a new area, where you have asked us to do so;
  • to analyse your activity on our website and social media streams so that we can administer, support, improve and develop our business and for statistical and analytical purposes;
  • to enforce our contractual terms with you and any other agreement, and for the exercise or defence of legal claims and to protect the rights of The Adelphi Genetics Forum, and our employees; and
  • if you submit comments and feedback regarding our services, with your prior consent we may use such comments and feedback on our website, social media streams and in any marketing or advertising materials.

Where we are under a legal obligation to do so we may use your information to:

  • create a record of your interactions with The Adelphi Genetics Forum;
  • comply with any legal obligation or regulatory requirement to which we are subject.

Cookies

You can set your browser to refuse all or some browser cookies, or to alert you when websites set or access cookies. If you disable or refuse cookies, please note that some parts of our site may become inaccessible or not function properly.

The Adelphi Genetics Forum uses Google Analytics to collect information about how you use the The Adelphi Genetics Forum website. We do this to help make sure the site is meeting the needs of its users and to help us make improvements, for example improving site content and navigation.

Google Analytics stores information about:

  • the pages you visit on our website
  • how long you spend on each website page
  • how you got to our website
  • what you click on while you’re visiting our website

Google Analytics does not collect or store your personal information (for example your name or address) so this information can’t be used to identify who you are.


Direct marketing

Where you have given your consent or where we have a legitimate interest for doing so (and are permitted to do so by law) we will use your information to let you know about our other products and services that may be of interest to you and we may contact you to do so by email or phone. You can control your email marketing preferences by:

  • clicking on the ‘unsubscribe’ button which can be found on the footer of The Adelphi Genetics Forum newsletters (this will automatically remove you from future The Adelphi Genetics Forum newsletter mailouts) replying to executiveoffice@adelphigenetics.org  with ‘unsubscribe’ in the subject field to be removed for future Adelphi Genetics Forum mailouts (details of how to unsubscribe can be found in the footer of every Adelphi Genetics Forum mailout).

Retention of your information

We will not retain your information for any longer than we think is necessary.

Information that we collect will be retained for as long as needed to fulfil the purposes outlined in the ‘Use of my information’ section above, in line with our legitimate interest or for a period specifically required by applicable regulations or laws, such as retaining the information for regulatory reporting purposes.

When determining the relevant retention periods, we will take into account factors including:

  • our contractual obligations and rights in relation to the information involved;
  • legal obligation(s) under applicable law to retain data for a certain period of time;
  • statute of limitations under applicable law(s);
  • our legitimate interests (potential) disputes; and
  • guidelines issued by relevant data protection authorities.

Otherwise, we securely erase your information where we no longer require your information for the purposes collected.


Disclosure of your information

The information we collect about you will be transferred to and stored on our servers. We are very careful and transparent about who else your information is shared with.

Sharing your information internally

We share your information internally only where necessary for the purposes set out in the ‘Use of your information’ section of this Privacy Statement.

Sharing your information with third parties

We share your information with third party service providers only where necessary. The types of third party service providers whom we share your information with includes:

  • Payment providers (including online payment providers and fraud detection providers): for the purposes of providing services to us, for example when they process information such as credit card payments for us, provide support services to you or carry out fraud checks for us;
  • IT service providers (including cloud providers): for the purposes of data storage, management and analysis;
  • Commissioners (including local authorities, schools, health services and statutory authorities)for the purposes of contract compliance; progress reporting on services being provided on behalf of commissioners; legal compliance, research and evaluation;
  • Duty of care; safeguarding regulations.

The Adelphi Genetics Forum will take all reasonable steps to ensure that your data is treated securely and in accordance with data protection legislation when it is transferred to third parties.

We may also share your information:

  • in order to enforce our contractual terms with you and any other agreement;
  • to protect the rights of The Adelphi Genetics Forum, employees, or others to prevent fraud; and
  • with such third parties as we consider necessary in order to prevent crime, e.g. the police.

Security

We adopt robust technologies and policies to ensure the personal information we hold about you is protected.

We take steps to protect your information from unauthorised access and against unlawful processing, accidental loss, destruction and damage.

Where you have chosen a password that allows you to access certain parts of the PAC-UK website, you are responsible for keeping this password confidential. We advise you not to share your password with anyone.

Unfortunately, the transmission of information via the internet is not completely secure. Although we will take steps to protect your information, we cannot guarantee the security of your data transmitted to the PAC-UK website and social media streams; any transmission is at your own risk. 


Your rights

Under data protection law, you have a number of rights concerning the data we hold about you. If you wish to exercise any of these rights, please contact our Data Protection Officer using the contact details set out above. For additional information on your rights please contact your data protection authority and see below.

The right to be informed. You have the right to be provided with clear, transparent and easily understandable information about how we use your information and your rights. This is why we’re providing you with the information in this statement.

The right of access. You have the right to obtain access to your information (if we’re processing it). This will enable you, for example, to check that we’re using your information in accordance with data protection law. If you wish to access the information we hold about you in this way, please get in touch (see Contact Details).

The right to rectification. You are entitled to have your information corrected if it is inaccurate or incomplete. You can request that we rectify any errors in information that we hold by contacting us (see Contact Details).

The right to erasure. This is also known as ‘the right to be forgotten’ and, in simple terms, enables you to request the deletion or removal of certain of the information that we hold about you by contacting us (see Contact Details).

The right to restrict processing. You have rights to ‘block’ or ‘suppress’ further use of your information. When processing is restricted, we can still store your information, but will not use it further.

The right to data portability. You have the right to obtain your personal information in an accessible and transferrable format so that you can re-use it for your own purposes across different service providers. This is not a general right however and there are exceptions. To learn more please get in touch (see Contact Details).

The right to lodge a complaint. You have the right to lodge a complaint about the way we handle or process your information with the national data protection authority, for the UK this is the Information Commissioners Office (ICO).

The right to withdraw consent. If you have given your consent to anything we do with your information (i.e. we rely on consent as a legal basis for processing your information), you have the right to withdraw that consent at any time. You can do this by contacting us (see Contact Details). Withdrawing consent will not however make unlawful our use of your information while consent had been apparent.

The right to object to processing. You have the right to object to certain types of processing, including processing for direct marketing and profiling. You can object by changing your marketing preferences or disabling cookies as set out above.


Changes to The Adelphi Genetics Forum’s Privacy Statement

Any changes to our privacy statement will be posted on The Adelphi Genetics Forum website and, where appropriate, we will notify you of the changes for example by email.

This privacy statement was last updated: 13/08/2022


Complaints

If you’re not satisfied with our response to any complaint or believe our processing of your information does not comply with data protection law, you can make a complaint to the Information Commissioner’s Office (ICO) using the following details:

Address: Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF
Telephone number: 0303 123 1113
Website: www.ico.org.uk

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