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


Illinois Society of Genetic Professionals

Chicago, IL USA

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