Center for Genomic Interpretation

Encouraging careful stewardship of clinical genetics, genomics and precision medicine

Sandy, UT   |  www.genomicinterpretation.org

Mission

Our mission is to encourage careful stewardship of clinical genetics, genomics and precision medicine.

Ruling year info

2017

CEO

Dr Julie M Eggington

Main address

49 Wanderwood Way

Sandy, UT 84092 USA

Show more contact info

EIN

82-0918164

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

University or Technological (B43)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The National Institute of Health warns that "most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller." By 2020 there were more than 140,000 different genetic & genomic tests on the clinical market in the US, sourced by over 1,700 clinics & laboratories, with insufficient metrics for clinicians to decipher which tests have value, & which do not. We estimate that as many as half the "positive" genetic/genomic test results that guide patient care are false positives, & that avoidable false negatives are also harming patients. Patients deserve accurate & useful answers from their clinical genetic tests ordered by clinicians. We work with multiple stakeholders to drive quality in clinical genetics, genomics and precision medicine.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

ELEVATEGENETICS

In ELEVATEGenetics we drive quality in clinical genetics and genomics by Engaging Laboratories, Encouraging Validity, Assessing Test Efficacy.
https://www.genomicinterpretation.org/elevategenetics/

Population(s) Served
Adults
Children
Infants and toddlers
Preteens
Adolescents

Project Heritage aims to save the lives of the unborn who might be aborted due to parents’ concerns about raising children with special needs.
https://www.clarifygenetics.org/project-heritage/

Population(s) Served
Pregnant people

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of volunteers

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics, Health, Ethnic and racial groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of grants received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Women and girls, Families, Parents, Ethnic and racial groups, Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of industry standards/practices developed by nonprofit

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of participants who felt that they have been provided with a range of options for future employment

This metric is no longer tracked.
Totals By Year
Population(s) Served

Young adults, Academics

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of meetings held with decision makers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Since we are heavily involved in the healthcare industry, which turned its focus mostly to COVID in 2020, we had to pivot to spend time improving programs and creating new ones .

Number of briefings or presentations held

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2020 was not a great year for folks interested in clinical genetics and genomics, since COVID was the primary topic of the year.

Number of multi-year contracts received

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

COVID held up our progress, but we're already seeing an uptick in 2021.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission is drive quality in clinical genetics, genomics and precision medicine.

We work to develop and deploy initiatives and tools for laboratories, health insurance companies, pharmaceutical companies, biotech companies, regulators, policy makers, hospitals, clinical groups, researchers, foundations, clinicians & patients to drive quality in clinical genetics, genomics & precision medicine. We also provide educational opportunities for the nation's up-and-coming clinical geneticists.

We are a group of veteran clinical genetic scientists dedicated to advancing the field. We work with stakeholders to educate about the quality issues that need improving within clinical genetics and genomics, and develop initiatives and tools to serve stakeholders to accomplish our mission. These initiatives include:
-ELEVATEGenetics, to Engage Laboratories, Encourage Validity and Assess Test Efficacy
-Variant Factchecker, a research second opinion service to independently evaluate the veracity of clinical variant classifications
-Project Heritage, a scientific positive predictive value support service and peer matching service for women who have received a positive result on noninvasive prenatal testing (NIPT)
-Positive Predictive Value online calculators for clinicians to estimate the accuracy of positive genetic test results they are reporting back to patients
-Remote internship programs, to bring research opportunities to those in smaller college and university settings who do not regularly access robust research experience and who wish to work on projects that will be published
-Academic peer-reviewed journal publishing

Through our ELEVATEGenetics and Variant FactChecker initiatives, we are currently engaging insurers, pharmaceutical companies and laboratories in quality assessment programs to improve the accuracy of clinical genetics. We are also supporting the Utah Department of Health on a CDC funded project to craft education content for clinicians to learn about which hereditary cancer testing laboratories are higher quality than other laboratories. We have also presented our initiatives and research at numerous national meetings since 2017, including the American Society of Human Genetics, National Society of Clinical Genetics, Genetic Health Network Information Summit, Rare Fair (for rare disease communities) and many other invited speaking educational events.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.),

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We recently split the ELEVATEGenetics initiative into smaller sections.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Center for Genomic Interpretation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Center for Genomic Interpretation

Board of directors
as of 7/6/2021
SOURCE: Self-reported by organization
Board chair

Dr Julie Eggington

Center for Genomic Interpretation

Term: 2017 -

Julie Eggington

Center for Genomic Interpretation

Heber Sheffield

Independent Business Consultant

Dr. J. Phil Harrop

President/COO-Mercy West Lakes and VP-Mercy Des Moines

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 10/22/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

Equity strategies

Last updated: 10/22/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.