What is the best way for providers to be involved with GenomeConnect?

Sharing information with patients about GenomeConnect and encouraging participation are the best ways for a provider to help with efforts at this time. We have resources to help inform patients about GenomeConnect. Resources including language that can be copied and pasted into a patient letter and a printable one-page PDF document to share can be found under documents. You also can request free informational postcards to share with your patients by emailing info@genomeconnect.org.
Are providers at risk for encouraging their patients to share copies of their genetic test reports?

Patients are a part of the healthcare team, and once they know their personal health information they are free to share it how and where they wish.

Can healthcare providers (like genetic counselors and doctors) contribute variant data to GenomeConnect?

If a healthcare provider has had genetic testing and wishes to share their own health and genetic information, they are welcome to join GenomeConnect.

 Registering for an account and providing health and variant data to GenomeConnect is confined to participants at this time.

  • Healthcare providers can inform patients about Genomeconnect, assist patients in registering for an account at genomeconnect.org, provide their patients with electronic versions of their test reports, and help them upload their test reports to their accounts.

  •  Providers should NOT register for a GenomeConnect account, unless they have had genetic testing themselves and wish to participate.  

How can healthcare providers help share their patient’s variant data if their patient cannot register for GenomeConnect?

A patient contacted me indicating that they received an email from GenomeConnect suggesting that there may be an update to their genetic testing result. Why did GenomeConnect reach out to this patient?

Genetic test results may list one or more genetic changes, each with an “interpretation” (what the laboratory thought each change meant in terms of health).  Over time, as we learn more about genetic changes, interpretations may change.  For example, a genetic change once classified as a “Variant of Uncertain Significance” can be changed to “Pathogenic,” or disease-causing based on new evidence.

When results are updated, some genetic testing laboratories will issue a new report to the doctor or genetic counselor that ordered the testing. Not every laboratory does this, however, and some healthcare providers ask that patients check-in regularly about their results.  Patients should always follow-up with a healthcare provider to discuss any updates to genetic testing and how this may impact their care.  GenomeConnect recognizes, however, that remembering to do this can be difficult.

GenomeConnect may learn through interaction with publicly available databases that the genetic testing report your patient shared with us has a variant interpretation that may be out of date. Individuals enrolled in GenomeConnect are given the option to receive such updates. If they elect to receive updates and the interpretation has been updated at the testing/performing laboratory, they are sent an email summarizing this and encouraging them to reach out to their provider that ordered testing or a genetics provider in their area. Next, you can reach out to the genetic testing laboratory that performed your patient’s testing to discuss any updates to their results and, if applicable, to request an updated testing report.