Click HERE to sign the petition to encourage transparency from hereditary cancer testing laboratories.

Up to 1 in 300 individuals in the United States have Hereditary Breast and Ovarian Cancer.

Purpose of the petition

Hereditary cancer genetic screening is essential to patient care and utilized in numerous clinical settings. According to the National Cancer Institute, inherited cancer causing genetic variants are thought to contribute to approximately 5 to 10% of all cancers. However, hereditary cancer genetic tests from different clinical laboratories vary in accuracy and usefulness in non-transparent ways. These differences are due in part to weak regulation of laboratory developed testing in the United States. Lack of transparency and a low bar for laboratory credentialing make it difficult for clinicians and patients to confidently select the most appropriate tests, even when hereditary cancer testing is recommended by clinical guidelines. To address this information gap, the Utah Department of Health and Human Services Cancer Genomics Program has contracted with the Center for Genomic Interpretation, in collaboration with the Association for Utah Genetic Counselors, to perform a survey of prominent laboratories offering comprehensive hereditary cancer testing to patients nationwide. In addition to petition signers on this webpage, the survey has been foundationally endorsed by the Screening and Genetics Section within the Division of Prevention and Community Health of the Washington State Department of Health, and the ScreenWise Program of the Oregon Health Authority, Public Health Division.

The attached transparency survey will facilitate comparison of similarities and differences between major laboratories’ comprehensive hereditary cancer genetic tests, and the laboratories’ patient support services for these tests. The information collected through this survey will be publicly accessible on the TestWisely.org website. Every patient being screened for hereditary cancer, and their clinicians and caregivers should have access to this important information.

Transparency survey sent to laboratories

List of laboratories that received the survey

In the first week of June 2023, the Chief Executive Officers of prominent hereditary cancer testing laboratories received an invitation, via recorded delivery courier service, to voluntarily participate in this transparency effort by having their laboratory complete the transparency survey by the 7th of July, 2023.  In response to laboratory requests, the deadline has been extended to Friday, July 21st for all invited laboratories. The following eleven executives received invitations regarding their tests:

Mr. Tom Schoenherr, CEO of Ambry Genetics, for their CustomNext-Cancer test.

Mr. Andy Theurer, CEO of ARUP Laboratories for their Hereditary Cancer Panel.

Mr. Othman Laraki, CEO of Color Health, for their Color Hereditary Cancer Test.

Kevin T. Conroy, Esq., CEO of Exact Sciences, for their PreventionGenetics Cancer Panel.

Mr. Ming Hsieh, CEO of Fulgent Genetics, for their Full Comprehensive Cancer Panel.

Ms. Katherine Stueland, CEO of GeneDx, for their Comprehensive Common Cancer Panel.

Mr. Kenneth Knight, CEO of Invitae, for their Invitae Multi-Cancer Panel.

Mr. Adam H. Schechter, CEO of Labcorp, for their VistaSeq Hereditary Cancer Panel.

Paul J. Diaz, Esq., CEO of Myriad Genetics, for their MyRisk test.

Mr. Steve Chapman, CEO of Natera, for their Empower Hereditary Cancer Test.

Mr. James E. Davis, CEO of Quest Diagnostics, for their Comprehensive Hereditary Cancer Panel.

Which laboratories are participating?

Follow the TestWisely.org news feed throughout June 2023 and into the first week of July 2023 for regular updates on which laboratories have accepted the invitation to participate in the transparency survey. Laboratories may choose to participate in full, or in part, or not at all. These updates will also track which laboratories, if any, choose not to participate in this transparency effort. Progress report updates will also be provided on the TestWisely.org news feed regarding the timeline and release dates of the collated information collected from laboratories.

1 in 279 individuals in the United States have inhereted Lynch Syndrome, which causes colorectal cancer, uterine cancers, and other cancers.

Sources of project funding

New donations and grants help to nourish this project. This project is supported by individual donors and the Utah Department of Health and Human Services Cancer Genomics Program by Cooperative Agreement Number, DP19-1905, funded by the Centers for Disease Control and Prevention (CDC). The CDC sourced funding was provided to improve patient access to high quality Hereditary Breast and Ovarian Cancer Syndrome testing and Lynch Syndrome testing. Additional support is provided by the Center for Genomic Interpretation and the Gordon and Betty Moore Foundation. This project’s contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention, the Utah Department of Health and Human Services, the Gordon and Betty Moore Foundation, and other donors.

Sign the petition

By adding my name and/or my organization’s name below, I endorse the laboratory transparency survey. I urge the invited laboratories to respond on time and in full to all of the survey questions. Transparency from laboratories is essential to improve access to high quality hereditary cancer genetic testing for those that need it.

SIGNING INSTRUCTIONS: Please complete four boxes below.  Also, under “Organization”, you are invited to enter “self” if you are signing on behalf of yourself only and not an organization.

Transparency Survey Petition

32 signatures
Latest Signatures
32 Stephanie Cohen Ascension St. Vincent Jul 11, 2023
31 krishnan chittur self Jun 29, 2023
30 Brenna Bentley Self Jun 29, 2023
29 Sonia Marsilio Self Jun 21, 2023
28 Wylene McDonald Jun 20, 2023
27 Erin Heckaman Center for Genomic Interpretation Jun 17, 2023
26 Deborah Pencarinha InformedDNA Jun 13, 2023
25 Aimee Jennings self Jun 13, 2023
24 Anna Vercruyssen Jun 13, 2023
23 Mary Oliver Informed DNA Jun 13, 2023
22 Xan Janiga None Jun 13, 2023
21 Jill Feldman EGFR Resisters Jun 13, 2023
20 Joy Miller Hope Abounds Jun 12, 2023
19 Mindy Hudson Self Jun 12, 2023
18 Kristen Kanack 8012450184 Jun 11, 2023
17 Wenora Johnson Patient/Research Advocate Jun 09, 2023
16 Lee Ellis MDACC Jun 09, 2023
15 Ximena Zendejas-Portugal Alliance Community Services Jun 09, 2023
14 Hailey Judd Utah DHHS Jun 08, 2023
13 Elizabeth Barnes Hope Abounds Cancer Network Jun 08, 2023
12 Alan McCann Self Jun 08, 2023
11 Mark Cross Consultant Jun 08, 2023
10 Kaitlyn Parker Bon Secours Mercy Health Jun 08, 2023
9 Kevin Knopf MD Alameda Health System Jun 08, 2023
8 Gabriela Portugal-Bouza Alliance Community Services Jun 08, 2023
7 Gabriela Portugal-Bouza Alliance Community Services Jun 08, 2023
6 Madison Sawyer Self Jun 08, 2023
5 Andrew Guinigundo Cincinnati Cancer Advisors Jun 08, 2023
4 Heather King Center for Genomic Interpretation Jun 08, 2023
3 Steven Rosen Wyss Institute at Harvard Jun 08, 2023
2 Elissa Morris Genetics Jun 07, 2023
1 Julie Eggington Center for Genomic Interpretation Jun 06, 2023