The Impact of Informed Consent

default author image05.14.2024

Crumiller is a proud member of the Informed Consent Coalition and looks forward to advocating for this bill during Family Advocacy Day on May 15, 2024.

The Informed Consent Coalition aims to “create a world that protects the dignity, integrity, and bodily autonomy of all families, … [and] end the surveillance and criminalization of perinatal people who use drugs.” The Coalition’s work meets at the intersection between racial and reproductive justice, drawing from the knowledge and experiences of people directly impacted by the family policing system, political activists, medical professionals, and civil rights organizations.

The Steering Committee is composed of The Bronx Defenders, Pregnancy Justice, Drug Policy Alliance, New York Civil Liberties Union, Black Families Love & Unite, and Jasmine Wali.

The Informed Consent Act (S320-B/A109-B) “prohibits drug, cannabis or alcohol testing and screening of pregnant or postpartum individuals and newborns unless the individual consents and it is within the scope of medical care, or the testing or screening is necessary for a medical emergency.” 

What does this bill mean for families?

Perinatal people and newborns would only be drug tested when needed for medical care. It would be required that patients give written and oral consent in their preferred language before receiving a test or screening for drugs, cannabis, or alcohol.

The Act would also make it necessary that the person consenting be informed of the following:

  • the test or screening is voluntary
  • a positive result has potential legal repercussions including Child Protective Services involvement
  • the extent of confidentiality of results
  • the testing or screening’s medical purpose
  • a general description of what the test or screening entails

The only exception would be during medical emergencies when obtaining consent would delay necessary care for the perinatal person or newborn being treated.

Why does it matter?

Drug testing that serves to penalize perinatal people, by forcing them into family separation, instead of providing support, hurts newborns and worsens the maternal mortality crisis. Test-and-report has been found to deter people from prenatal care, which is detrimental to the thriving of newborns, enables the family policing system, and is inherently racist. It’s important to note that test-and-report isn’t required by New York State or federal law.

Modern test-and-report practices are rooted in the War on Drugs and the Child Abuse Prevention and Treatment Act (CAPTA), which was passed in 1974. The Nixon Administration created CAPTA to combat child maltreatment but refused to provide funds to address structural conditions like child poverty. In order for states to receive federal grants under CAPTA, states had to enact mandated reporting laws, which require social workers, doctors, teachers, and others to report suspected child abuse and neglect to local child protective agencies. In reality, these mandated reporters serve as an extra level of surveillance and monitoring of marginalized communities, especially targeting Black, Latine, and Indigenous parents. 

Racism plays an important role in the decision to test or screen pregnant and postpartum individuals and newborns. Hospitals also order newborn drug testing at higher rates for Black families than white families though Black women use substances at similar rates to white women. This results in high levels of separation within Black families, which account for 41% of all cases formally filed by the Administration for Children’s Services (ACS) in NYC. Family separation leads to long-lasting trauma, including disruptions to psychological and identity development and PTSD. 

The leading cause of pregnancy-related deaths in the United States are mental health conditions, including substance use disorders that lead to overdose, accounting for nearly 23% of all maternal deaths. People need to be able to trust that they can turn to their medical professionals for support, especially perinatal individuals. Uninformed or medically unnecessary drug testing does not aid in building trust when it is used to justify punishment. The priority should be keeping families together and making sure each individual is getting the care they need to be safe and secure.

When states prioritize punishment over support, by penalizing or criminalizing substance use during pregnancy, they see worse outcomes for their newborns. States with these kinds of punitive policies are associated with higher rates of Neonatal Abstinence Syndrome (NAS), drug withdrawal in babies after birth due to the carrying parent’s substance use, typically associated with opioid use. Researchers in the previously linked study noted that the higher rates are likely due to the mistrust drug testing can foster between patients and their providers, making them less likely to schedule or attend prenatal care appointments. It also is important to note that an increasing recommendation for treating NAS is known as “Eat, Sleep, Console”, which requires close contact with birthing parents in order to work. Separating a newborn with NAS from their birthing parents takes away an opportunity to provide needed care.

While the Informed Consent Act will not solve the complexities of the maternal health crisis and the family policing system, it helps create transparency and facilitates trust in the medical system.