Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening.
BACKGROUND
Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results.


METHODS
To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42).


RESULTS
Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%-92.7%) and to reasons opposing disclosure was low (4.1%-18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%-78.8%), and more agreement with arguments opposing disclosure (15.7%-51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived "duty" to disclose, that if the clinician possessed the information, the clinician could not withhold it.


CONCLUSIONS
While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives.
Department of Health Policy, Management and Evaluation, University of Toronto, Ontario, Canada. fiona.miller@utoronto.ca
F A
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Miller
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Hayeems
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Bombard
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Little
J C
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Carroll
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Wilson
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Allanson
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Paynter
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Bytautas
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Christensen
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Chakraborty
D000755:Anemia, Sickle Cell / Q000175:diagnosis / Q000235:genetics; D001291:Attitude of Health Personnel; D002353:Carrier State; D003430:Cross-Sectional Studies; D005817:Genetic Counseling / Q000941:ethics; D005820:Genetic Testing; D006801:Humans; D033162:Incidental Findings; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics*; D009864:Ontario; D010290:Parents / Q000193:education; D011795:Surveys and Questionnaires; D014342:Truth Disclosure / Q000941:ethics*