Would moms who drank alcohol during pregnancy go underground to avoid their newborn babies being screened for FASD?
Judgment, lack of privacy, stigma and stereotyping of women considered to be “at risk” could alienate some mothers to the point they don’t give birth in medical settings, according to neuroethicists and researchers quoted in “Ethical and Social Challenges in Newborn Screening for Prenatal Alcohol Exposure” – a comment authored by NeuroDevNet researchers in the Canadian Journal of Neurosciences.
Testing of meconium – the blackish material babies pass before milk/formula-based stool appears, as well as maternal hair can be – and has been – screened for fatty acid ethyl esters as an indicator of prenatal alcohol exposure. Evidence based on such testing has already been used in divorce and custody cases in criminal law, as a reflection of a mother’s integrity, according to Anna Zadunayski, LLB, a clinical ethicist and lawyer.
Ms Zadunayski was one of four Canadian experts who participated in a panel discussion entitled “Neuroethics and FASD” at NeuroDevNet’s 3rd Annual Brain Development Conference. Joining Zadunayski were Dr. James Reynolds, co-lead of NeuroDevNet’s FASD research group, Dr. Gideon Koren, clinical researcher and mastermind behind the Motherrisk website, an authoritative resource on maternal exposures, and Dr. Nina DiPietro, a neuroethicst and research associate at the National Core for Neuroethics.
Five topics recurred prominently in individual presentations by the panelists, and in their discussion among themselves and with the audience at the conference: validity of screening methods; disclosure and informed consent; populations to screen; best interests, role sand responsibilities of stekholders; and privacy and the appropriate use of results.
NeuroDevNet neuroethics researchers based at the Institut de recherches cliniques de Montreal have addressed these enduring questions in their recent commentary. “It was important to revisit these considerations now,” says co-author Dr. Emily Bell, “because several high profile North American media reports describing women who have had their children apprehended by social services, or who were incarcerated or forced into treatment programs based on a history of substance misuse or a lack of adherence to addiction treatment programs, have brought calls for compassion.”
The 2012 panel, followed by a public forum, was an exciting opportunity to hear from experts from diverse fields, and to engage with the public interaction on important ethics issues in research and care for people with neurodevelopmental disorders – in this case, FASD, according to Dr. Bell.
She, Dr. Eric Racine and colleague Allison Yan collaborated on the article in hopes of making the forum content more widely available to the research community, and encouraging further consideration on the social and ethical implications of emerging screening technologies.
Detection of fetal alcohol exposure is limited – as meconium is not produced until after the first trimester of pregnancy, and phosphatidylethanol, another metabolite of ethanol that can be detected reliably in fetal red blood cells, but only for exposures approximately one month before birth. The development of these biomarkers is an area which will need to be complemented by thoughtful policy, stresses Dr. Bell.
“The opportunity to measure or detect PAE has important implications for population surveillance and individual screening,” she adds. “But the accompanying ethical and social issues need to be considered to ensure effective health system delivery and an understanding of the obligations of health and social care professionals. Otherwise, uneven application of these tools or policies could ultimately create additional vulnerability or burden for mothers or children undergoing testing.”
Click to download a copy of: Panel_PAE and biomarkers 2014
