Privacy Statement and Participant Consent


The purpose of ConnectMyVariant services is to help you share prevention, treatment, and family history information with other individuals who have the same genetic variant. Through this service you can choose which of the activities below you are interested in:

  • Learn how to explain your family's variant to your immediate relatives

  • Find out where your relatives can obtain genetic testing for your variant

  • Learn how to find other relatives (2nd -3rd cousins or beyond) so you can inform them about your family history and the chance that they may have your variant

  • Find people with your variant online (through Facebook, FORCE message boards, etc.)

  • Obtain guidance on how to use the information you have and/or will have from your ancestry testing (such as AncestryDNA, 23&Me, or MyHeritageDNA) to search for others who may have your variant

  • Figure out who your variant came from or if there is a different disease risk pattern for your family's variant

Use of Personal Data

To help protect your privacy and the privacy of others when you engage in the above activities, ConnectMyVariant shares only limited data—your first name and the contact information you choose (email, phone, or online group link)—with other individuals who report having the same variant as you.

You may also receive contact information from a limited number of people with the same variant as you. If there are more than a small number of individuals with the same variant, ConnectMyVariant will try to identify one or more variant champions to help facilitate communication between the individuals with the same variant. Identifying a variant champion is another way that the ConnectMyVariant activities are designed to help protect your privacy and the privacy of others.

Sharing Personal Data

Your data will not be shared outside of ConnectMyVariant except to comply with valid legal processes, governmental requests, applicable laws, rules, and regulations, and to enhance your experience through our work with service providers.

This includes, but is not limited to, ConnectMyVariant’s partnership with the BYU Center for Family History and Genealogy (CFHG) to help some participants find common ancestors. If you share family history information with the CFHG, it may also be shared with ConnectMyVariant staff and other ConnectMyVariant participants with the same variant. This also includes sharing information with physicians or others programs to pass your contact information to others with your variant.


Agreement to participate will be maintained for at least their minimum required retention period according to the Washington State Records policies (GS 01050). Records with personal data will be accessed only by those with a legitimate need to access them.

Management of Personal Data

You may have certain rights under EU GDPR such as the right to request access to or to request the erasure, correction, or transfer of your personal data. Under EU GDPR, you may also have the right to lodge a complaint with a supervisory authority.


For more information about ConnectMyVariant you may contact ConnectMyVariant at

By signing up for ConnectMyVariant you agree:

  • To the processing of personal data as described on this consent page.

  • Not to contact other ConnectMyVariant participants with information that is unlawful, obscene, defamatory, threatening, harassing, abusive, or hateful.

  • Not to contact other ConectMyVariant participants for commercial purposes.

  • Not to share other individuals’ contact information without their consent or otherwise infringe on privacy rights or individual rights of others.