The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing

AJ Newson - Human Genetics, 2022 - Springer
Precision medicine aims to tailor medical treatment to match individual characteristics and to
stratify individuals to concentrate benefits and avoid harm. It has recently been joined by …

The Ethics of Human Embryo Editing via CRISPR-Cas9 Technology: A Systematic Review of Ethical Arguments, Reasons, and Concerns

L Wiley, M Cheek, E LaFar, X Ma, J Sekowski… - HEC Forum, 2024 - Springer
The possibility of editing the genomes of human embryos has generated significant
discussion and interest as a matter of science and ethics. While it holds significant promise …

[HTML][HTML] Rethinking the “open future” argument against predictive genetic testing of children

JR Garrett, JD Lantos, LG Biesecker, JE Childerhose… - Genetics in …, 2019 - Elsevier
Professional consensus has traditionally discouraged predictive genetic testing when no
childhood interventions can reduce future morbidity or mortality. However, advances in …

Genomic sequencing in newborn screening: Balancing consent with the right of the asymptomatic at-risk child to be found

BM Knoppers, AE Bonilha, AM Laberge… - European Journal of …, 2024 - nature.com
In this paper, we explore key aspects of the complex ethical and legal landscape
surrounding consent in the context of incorporating genomic sequencing into existing …

The right not to know and the obligation to know

B Davies - Journal of Medical Ethics, 2020 - jme.bmj.com
There is significant controversy over whether patients have a 'right not to know'information
relevant to their health. Some arguments for limiting such a right appeal to potential burdens …

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

AK Smit, G Reyes-Marcelino, L Keogh, K Dunlop… - BMC Public Health, 2020 - Springer
Background Genomic risk information, based on common genomic susceptibility variants
associated with risk of complex diseases such as cancer, may be incorporated into …

'There is a lot of good in knowing, but there is also a lot of downs': public views on ethical considerations in population genomic screening

AK Smit, G Reyes-Marcelino, L Keogh, AE Cust… - Journal of medical …, 2021 - jme.bmj.com
Publics are key stakeholders in population genomic screening and their perspectives on
ethical considerations are relevant to programme design and policy making. Using semi …

From a right to a preference: rethinking the right to genomic ignorance

L Dive - The Journal of Medicine and Philosophy: A Forum for …, 2021 - academic.oup.com
The “right not to know” has generated significant discussion, especially regarding genetic
information. In this paper, I argue that this purported right is better understood as a …

The right not to know: some steps towards a compromise

B Davies, J Savulescu - Ethical Theory and Moral Practice, 2021 - Springer
There is an ongoing debate in medicine about whether patients have a 'right not to
know'pertinent medical information, such as diagnoses of life-altering diseases. While this …

Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies

HT Rothschild, BR Lianoglou… - Prenatal …, 2024 - Wiley Online Library
Objective Despite exome sequencing (ES) becoming increasingly incorporated into the
prenatal setting, few studies have elucidated motivations for and trust in ES and genomic …