Beneficence In Utero: A Framework for Restricted Prenatal Whole-Genome Sequencing to Respect and Enhance the Well-Being of Children

Conley, I. I. W. Kevin; McAdams, Douglas C.; Donovan, G. Kevin; Fitzgerald, Kevin T.

doi:10.1080/15265161.2016.1251655

Cited by 6 publications

(2 citation statements)

References 3 publications

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“…Developments in non-invasive prenatal testing of maternal serum (NIPT) and genetic analysis of cell-free fetal nucleic acid (cff-DNA) are raising the prospect that antenatal services will soon be able to provide women with the option of screening for an unprecedented range of genetic conditions and traits (Hui and Bianchi 2017; Wong et al 2016). Predictably, such developments are now prompting considerable debate within the bioethics literature about the possibility of expansion; more specifically, about what conditions should be prioritized when offering screening for a broader range of conditions would be irresponsible in light of resource constraints (Allyse et al 2017; Berkman and Bayefsky 2017; Botkin et al 2017; Chen and Wasserman 2017; Conley II et al 2017; de Jong and de Wert 2015; Munthe 2015; Stapleton 2017; Wilkinson 2015).…”

Section: Introductionmentioning

confidence: 99%

Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities

Stapleton

Dondorp

Schröder‐Bäck

2019

Med Health Care and Philos

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Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child).

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Section: Introductionmentioning

confidence: 99%

Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities

Stapleton

Dondorp

Schröder‐Bäck

2019

Med Health Care and Philos

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“…They argue that by not limiting testing by severity of conditions, their approach will neither devalue the lives of individuals with disabilities nor encroach on reproductive autonomy. Some commentators (Conley et al 2017; Rhodes 2017; Wilfond 2017) applaud their framework's potential to minimize biases against people who have subjectively "bad" genetic conditions. Others, however, challenge the proposal for its unrealistic view of the clinical, regulatory, and sociological context in which it is intended to operate (Allyse et al 2017).…”

Section: Modern Pregnancies and (Im)perfect Babiesmentioning

confidence: 99%