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Questioning the consensus: managing carrier status results generated by newborn screening.
Fiona Alice Miller1, Jason Scott Robert, Robin Z Hayeems
1Department of Health Policy, Faculty of Medicine, University of Toronto, Toronto, ON, Canada. fiona.miller@utoronto.ca
American Journal of Public Health
|December 9, 2008
Summary
Newborn screening carrier status results cannot be withheld from parents, balancing patient autonomy with public health ethics. This approach navigates the moral dilemma of informing parents about incidental genetic findings.
Area of Science:
- Bioethics
- Public Health
- Genetics
Background:
- Newborn screening incidentally generates carrier status information.
- Clinical bioethics prioritizes patient autonomy, generally opposing withholding results.
- Public health interventions may necessitate a paternalistic approach.
Purpose of the Study:
- To examine the ethical conflict in managing incidental carrier status results from newborn screening.
- To explore the tension between parental autonomy and public health imperatives.
- To advocate for a public health ethics framework for handling carrier information.
Main Methods:
- Ethical analysis of clinical bioethics principles.
- Examination of public health ethics regarding collective authority.
- Review of the moral considerations in disclosing incidental findings.
Main Results:
- A conflict exists between the principle of autonomy and the goals of public health in newborn screening.
- Withholding carrier information infringes on parental rights, while mandatory disclosure can be seen as paternalistic.
- Existing bioethical frameworks may not fully address the unique challenges of public health screening.
Conclusions:
- Resolving the dilemma of carrier status disclosure requires a nuanced understanding of public health ethics.
- The exercise of collective authority is morally imperative for achieving public health benefits.
- A distinct public health ethical approach is needed to guide the management of incidental carrier findings.
