Responding to requests of families for unproven interventions in neurodevelopmental disorders: Hyperbaric oxygen “treatment” and stem cell “therapy” in cerebral palsy

Abstract

Faced with the limitations of currently available mainstream medical treatments and interventions, parents of children with neurodevelopmental disorders often seek information about unproven interventions. These interventions frequently have undetermined efficacy and uncertain safety profiles. In this article, we present a general background and case vignettes that highlight the use of hyperbaric oxygen chambers and stem cells in cerebral palsy, the leading cause of pediatric physical disability. We then review the current evidence about these interventions as exemplars of unproven therapies. Building on the background and cases, we explore and review two important questions related to unproven interventions: (1) How should clinicians respond to requests for innovative and alternative interventions? (2) What should clinicians keep in mind when such requests come from online sources? © 2012 Wiley Periodicals, Inc. Dev Disabil Res Rev 2011; 17:19–26.

New Ethical Issues in Cerebral Palsy

“…The principle of nonmaleficence also emphasizes the patient's interest, in particular his or her quality of life. A common challenge to both of the beneficence and maleficence principles occurs when caregivers desire to try unproven interventions for cerebral palsy, e.g., hyperbaric oxygen or stem cell therapy (35). One important aspect when addressing this challenge is to make sure they have sufficiently sound information to make informed decisions about risks and benefits.…”

Neuroethics: A Moral Approach towards Neuroscience Research

“…Multiple studies evince the potential use of stem cells such as use of induced pluripotent stem cells (iPSCs) in various neurodegenerative disorders such as Parkinson's disease (20,21), Multiple Sclerosis (20, 22) etc. Mostly, iPSCs have been used to treat animal models of Parkinson's Disease (21) and Cerebral palsy (23). This highlights the neuroethical issues concerning animal models used in research studies since most of their "diseases" are inflicted and not natural and also not a fully valid representative of the same disease in humans regarding disease features and response to therapy.…”

Unproven stem cell-based interventions & physicians’ professional obligations; a qualitative study with medical regulatory authorities in Canada

“…For example, in some cases they provide unproven stem cell-based interventions directly to their patients [ 14 , 15 ]; in other cases they advertise or offer referrals to providers in other jurisdictions [ 16 ]. In yet other situations they act as sources of information and advice for their patients [ 17 , 18 ], among various other types and degrees of involvement (e.g., clinic ownership, membership on advisory boards, suppliers of cell lines, etc.). Even when physicians are not directly involved in providing the unproven interventions, research from other areas of medical tourism suggests that physicians are being asked by patients for advice and direction about procedures offered elsewhere [ 19 ], and are also being approached by patients seeking medical records or particular diagnostic tests to prepare for treatment abroad [ 20 ].…”