Multi Colored Trim on a square box. Black text on white background reads: To Promote More Informed Healthcare and Greater Equity Towards People with Disabilities: 1. Insurance Coverage of independent genetic counseling. 2. FDA Regulation of Advertising claims made by testing labs. 3. better educational infrastructure for patients to understand testing and disabilities. 4. Insurance coverage of testing contingent on the provision of better patient education and access to independent pre-test and post-test counseling

In Response to the NY Times: Prenatal Screening and the Social Bias Against Disability

By Stephanie Meredith

A recent New York Times article, “When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong” by Sarah Kliff, indicates that when cell-free DNA prenatal screening results show that a baby has high chances for some rare genetic conditions, the baby actually does not have the condition 70-90% of the time (a false positive) (2022). Many parents at the other end of the screening results describe the experience as stressful and scary because they weren’t given sufficient information about the accuracy of the tests and the possibility of false positives. Kliff shares that one reason why expectant parents misunderstand the screening tests is because testing labs describe their screening tests as “reliable,” “highly accurate,” etc. in their advertising materials. Moreover, the author asserts that the companies are highly motivated to expand testing so that they can increase profits in a highly lucrative market. Yet, this widening pool of expectant parents who are undergoing testing can leave some parents in the lurch when they don’t receive the counseling and information they need to properly understand the screening tests. Kliff effectively highlights these important issues and presents a strong case for FDA regulation of advertising claims made by testing labs and insurance coverage of independent genetic counseling.

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Loss and COVID-19: The Toll on Children

Authored by: Tracy Waller, Esq., MPH[1]


As a result of the COVID-19 public health crisis, children are being forced to shoulder an incomprehensible burden of loss. Many children have experienced health issues due to COVID-19 infections or long COVID-19 symptoms. They have also encountered a loss of innocence and protection, as they shoulder the weight of a parent coping with long COVID-19—or worse, the death of a parent or primary caregiver from COVID-19. This loss disproportionately affects young children and children with developmental disabilities because of the increased reliance on their caregivers. 

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