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MNAAP Newsletter

Sterilization of Minors — Ethical Issues and How to Proceed

By Sheldon Berkowitz, MD, FAAP

Sterilization of minors is an uncommon procedure in pediatric practices, but an important one to understand if a family requests information about it. This article will help to understand what the ethical issues are and how to proceed if it is requested for your patient. Typically, this issue is only brought up for our patients with complex health care needs for whom it is felt that pregnancy (or fatherhood) would present significant problems for your patient or the potential offspring.

The background of this subject and the main reason why there has been so much oversight provided is that in the past, eugenics and other movements to limit reproduction of certain elements of our society led to mistreatment of our most vulnerable patients. The desire to prevent patients with diagnoses such as Trisomy 21 or mental retardation from procreating and potentially bringing more children with these problems into the population resulted in young adults being sterilized, often without any oversight as to whether this was the right thing to do or not.

As a result of these abuses of the medical system, both the American Academy of Pediatrics (AAP) and the American College of OBGYN (ACOG) have published policy statements on when and how minors can undergo sterilization. The goal of these policy statements is to protect the rights of minor patients who may not be able to speak for themselves and to limit possible harm to them if the procedure is not indicated. Because minor patients cannot legally consent to invasive procedures, their parents are given the right as surrogate decision makers to make decisions for them – as long as they are acting in the best interests of their child.

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Newborn Screening: New Disorders and the Changing Landscape

SheldonBerkowitzBy Sheldon Berkowitz, MD, FAAP, MNAAP Board of Directors; Maggie Dreon, MS, CGC, Amy Gaviglio, MS, CGC, Sondra Rosendahl, MS, CGC, Minnesota Department of Health Newborn Screening Program

Minnesota has a long history of being a leader in newborn screening, often being one of the first states to tackle a new initiative or add a new disorder. Over the past year, Minnesota’s Newborn Screening program has been working to bring three disorders to Minnesota’s panel: mucopolysaccharidosis type I (MPS I), Pompe disease, and X-linked adrenoleukodystophy (X-ALD).

Adding a new condition always brings with it new challenges, and these three disorders present several novel issues not previously encountered in newborn screening. Because these conditions have variable severity, age of onset, and treatment efficacy, the role of the primary care provider (PCP) in follow-up of positive screens will be increasingly vital and ongoing.

Take X-ALD, for example. There are three types of X-ALD and screening cannot clearly distinguish among them: childhood cerebral, adrenomyeloneuropathy, and Addison’s disease only. Furthermore, diagnostic testing is often unable to determine type until symptoms present. In X-ALD, treatment isn’t usually initiated until the onset of symptoms, which can take years to develop. Even individuals with the childhood cerebral type (the most severe and earliest onset type), may not show symptoms prior to four years of age. This means that PCPs will need to work with specialists to monitor their patients for symptom onset for longer than they have had to do for newborn screening conditions in the past. This later age of onset puts families—and PCPs—in a “sit and wait” situation. The risk is that families will become complacent with waiting, will stop following up, and then miss the key features of the disorder that show onset has occurred. Once onset occurs, the impact of the disease is irreversible, making the goal of catching symptoms early essential and the relationship between the family and PCP critical.

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