Removal of screening conditions: Ethical issues (original) (raw)
Related papers
Ethical problems with neonatal screening
Annali dell'Istituto superiore di sanità , 2009
The availability of novel technologies, such as tandem-mass-spectrometry (MS/MS) and DNA analysis, has expanded tremendously the number of genetic conditions that can be diagnosed through neonatal screening programs at birth, including conditions that cannot be treated nor prevented, or that will become manifest only later in life, or that identify individuals that are only at an increased risk of multifactorial conditions. This has increased the number and complexity of ethical problems related to newborn screening programs, creating considerable confusion and generating controversies and ethical concerns. The experience so far gained indicates that, besides the incomplete knowledge of many aspects of the conditions to be identified, the majority of screening programs do not pay sufficient attention to the problems of communication, information and counselling of the parents. Therefore, communication must be substantially improved if we wish to increase the efficiency of such progr...
Qualifying choice: ethical reflection on the scope of prenatal screening
Medicine, Health Care and Philosophy, 2016
In the near future developments in non-invasive prenatal testing (NIPT) may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders. In support of this recommendation, the ESHG and ASHG discuss a number of ethical issues on which they prompt further debate: the informational privacy of the future child, the trivialization of abortion, the risk of information overload, and issues of distributive justice. This paper responds to this call with further reflection on each ethical issue and how it relates to the moral justification of providing couples with opportunities for meaningful reproductive choice. The paper concludes that whilst there may be good reasons for qualifying the scope of any unsolicited prenatal screening offer to serious congenital conditions and childhood disorders, if prenatal screening is justified for providing couples with opportunities for meaningful reproductive choice, then health services may have obligations to empower couples with the same opportunity where concerning other conditions.
Journal of Medical Ethics, 2009
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. Discussion: 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.
Primum Non Nocere and the Quality of Evidence: Rethinking the Ethics of Screening
The Journal of the American Board of Family Medicine, 2000
Background: Screening is different from investigation, and these differences have important implications in the assessment of screening programs. Methods: I review the differences between screening and investigation and the implications of these differences derived from a consideration of the four ethical principles of beneficence, nonmaleficence, autonomy, and distributive justice. Results: Because most of the hanns of screening fallon the healthy and because screening is initiated by physicians, nonmaleficence takes ethical precedence over beneficence. Issues related to cost and consent are also approached differently in screening compared with investigation, and both take on greater ethical importance. I contend further that these ethical implications require that screening programs be backed up by better evidence than is the usual case for investigative medicine. I suggest an outline for the appropriate assessment of screening programs and for the ethical responsibilities of those involved in screening. Conclusions: Many current medical screening practices are not concordant with our ethical principles and should be reassessed.