Resources


Genetic Counseling Licensure

Illinois Department of Financial and Professional Regulations

Administrative Rules (IDPR Interpretation of the Act)



Genetics and Newborn Screening

Illinois Department of Public Health


Region 4 

Genetics Collaborative

 

University of Illinois at Chicago: Department of Specialized Care for Children

UIC: DSCC

ISGP Statement on Reproductive Freedom

We endorse the statements published by the National Society of Genetic Counselors and other medical professional organizations that state all individuals have the right to make independent reproductive health decisions, including access to safe abortion services.

We oppose any legislation which would prohibit genetic counselors and other genetic healthcare professionals from fulfilling our duties to our patients as outlined in our code of ethics. This includes providing unbiased counseling on all reproductive health care options. We oppose any governmental actions that would limit necessary reproductive options for our patients thereby preventing us from fulfilling our professional duties. We are particularly concerned about the ways in which these reproductive restrictions will continue to disproportionately impact the marginalized communities we serve.

We remain dedicated in our efforts to ensure all individuals have equitable care with access to medically accurate information and safe abortion. 

Relevant Links:


ISGP Statement on Use of Genetic Information in Determination of Cause of Death

We are greatly concerned to learn of evidence of the misuse of sickle cell trait in determining the  cause of death in cases where excessive use of force against a person of color was the more significant factor. 

In light of this issue, we strongly recommend additional reporting, investigation, and research regarding the appropriate uses and potential misuse of genetic information in the context of determination of cause of death.

Due to the complexity and nuance of genetic diagnosis, testing, result interpretation, and effect on family members, genetic information should be used with caution. If a cause of death may involve a genetic component, we recommend consultation with a genetics expert such as a geneticist, genetic counselor, or physician with expertise in genetics and the condition in question.

There are numerous diseases with genetic contributors that may be associated with sudden death, including cardiomyopathy, arrhythmia, structural heart disease, myocardial infarction, seizure, and metabolic disorders. The potential effect of these diagnoses should be carefully and appropriately adjudicated in the context of external factors such as physical violence, neglect, and other health concerns.

Related Links

https://www.nytimes.com/2021/05/15/us/african-americans-sickle-cell-police.html

https://www.scientificamerican.com/article/some-medical-examiners-say-sickle-cell-trait-causes-sudden-death-theyre-wrong/ 

https://www.hematology.org/advocacy/policy-statements/2021/ash-position-on-sickle-cell-trait

https://www.nejm.org/doi/full/10.1056/NEJMp2022125


ISGP HB 1779 Germline Inclusion Statement

On 7/30/21, Illinois House Bill 1779 (HB1779) became law, expanding insurance coverage of biomarker testing with the goal of improving cancer treatment outcomes and reducing health disparities. HB1779 amends the Illinois Insurance Code to provide that any health care service plan “that is issued, amended, delivered, or renewed on or after January 1, 2022 shall notrequire prior authorization for biomarker testing for an insured with advanced or metastatic stage 3 or 4 cancer.”

As defined by HB1779, a biomarker is an objective measurement or evaluation for biological processes which “includes, but is not limited to, gene mutation or protein expression.” Biomarker testing is the analysis of a patient’s tissue, blood, or fluid biospecimen for the presence of a biomarker and “includes, but is not limited to, single-analyte tests, multi-plex panel tests, and partial or whole genome sequencing.” 

HB1779 states that biomarker testing for treatment decisions must be covered when testing is supported by "nationally recognized clinical practice guidelines; consensus statements;        professional society recommendations; [and] peer-reviewed literature." To this point, biomarker testing, including both germline and somatic genetic testing, is recommended by several cancer organizations such as the National Comprehensive Cancer Network (NCCN), U.S. Preventive Services Task Force, Commission on Cancer, American Society of Clinical Oncology, American Society of Breast Surgeons and more. The results of both germline and somatic genetic testing often drastically impact cancer treatment and management decisions, from therapeutic eligibility to surgical decision making, as endorsed by the above groups. [see resource links below]

The Illinois Society of Genetics Professionals (ISGP) recognizes the impact of this bill for patient care in the state of Illinois and the precedent it sets for providing personalized, equitable cancer care and treatment by increasing access to biomarker testing, including germline and somatic genetic testing. We look forward to seeing this bill implemented in patient care decisions as it will impact patients with cancer and their relatives who may also be at high risk. ISGP, as the only organization in Illinois exclusively devoted to the interests of the state’s medical genetics professional community, is available as a resource to support the implementation of HB1779.

Resources:

Illinois Society of Genetic Professionals

Chicago, IL USA

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