The evolving landscape of expanded carrier screening: challenges and opportunities

SA Kraft, D Duenas, BS Wilfond, KAB Goddard - Genetics in Medicine, 2019 - nature.com
Carrier screening allows individuals to learn their chance of passing on an autosomal or X-
linked condition to their offspring. Initially introduced as single-disease, ancestry-based …

Ethical implications of epigenetics in the era of personalized medicine

J Santaló, M Berdasco - Clinical epigenetics, 2022 - Springer
Given the increasing research activity on epigenetics to monitor human diseases and its
connection with lifestyle and environmental expositions, the field of epigenetics has attracted …

Reflections on dynamic consent in biomedical research: the story so far

HJA Teare, M Prictor, J Kaye - European journal of human genetics, 2021 - nature.com
Dynamic consent (DC) was originally developed in response to challenges to the informed
consent process presented by participants agreeing to 'future research'in biobanking. In the …

Epigenome-based cancer risk prediction: rationale, opportunities and challenges

M Widschwendter, A Jones, I Evans, D Reisel… - Nature reviews Clinical …, 2018 - nature.com
The incidence of cancer is continuing to rise and risk-tailored early diagnostic and/or primary
prevention strategies are urgently required. The ideal risk-predictive test should: integrate …

Biomedical big data: new models of control over access, use and governance

E Vayena, A Blasimme - Journal of bioethical inquiry, 2017 - Springer
Empirical evidence suggests that while people hold the capacity to control their data in high
regard, they increasingly experience a loss of control over their data in the online world. The …

[HTML][HTML] Returning actionable genomic results in a research biobank: Analytic validity, clinical implementation, and resource utilization

CLB Zawatsky, N Shah, K Machini, E Perez… - The American Journal of …, 2021 - cell.com
Over 100 million research participants around the world have had research array-based
genotyping (GT) or genome sequencing (GS), but only a small fraction of these have been …

Health research with big data: time for systemic oversight

E Vayena, A Blasimme - The journal of law, medicine & …, 2018 - journals.sagepub.com
To address the ethical challenges in big data health research we propose the concept of
systemic oversight. This approach is based on six defining features (adaptivity, flexibility …

A mobile revolution for healthcare? Setting the agenda for bioethics

F Lucivero, KR Jongsma - Journal of Medical Ethics, 2018 - jme.bmj.com
Mobile health (mHealth) is rapidly being implemented and changing our ways of doing,
understanding and organising healthcare. mHealth includes wearable devices as well as …

Direct-to-consumer genetic testing and personal genomics services: a review of recent empirical studies

JS Roberts, J Ostergren - Current genetic medicine reports, 2013 - Springer
Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone
dramatic changes in its brief history. Debates over appropriate health policies regarding …

Evaluating models of consent in changing health research environments

S Wiertz, J Boldt - Medicine, Health Care and Philosophy, 2022 - Springer
Abstract While Specific Informed Consent has been the established standard for obtaining
consent for medical research for many years, it does not appear suitable for large-scale …