The Invisible Child of Personalised Medicine

Research output: Contribution to conferenceConference abstract for conferenceResearchpeer-review

Personalised Medicine is increasingly promoted as cutting edge health technology that will improve patient outcomes through tailored treatment and diagnosis. In several countries, it is already poised to become an integral part of public healthcare, which underscores the need for adequate reflection. Yet, as this paper will emphasise, existing laws and policies often neglect the particular legal and ethical issues facing children.
The paper maps the potential risks facing children through the lens of equality. It suggests that personalised medicine may result in inequalities in terms of access to treatment and information. This is particularly true where parents are the sole decision makers. Furthermore, personalised medicine may generate inequalities for the future adult, including potential discrimination. This raises questions such as, should children’s genomes be sequenced before they can provide consent, and should sequencing be permitted on healthy children?
Finally, the paper makes recommendations for how inequalities could be mitigated in a manner that upholds children’s best interests. This includes strengthening children’s participation while limiting the implications of parents’ decisions, and ensuring involvement of families belonging to minority ethnic groups. New technical solutions should be developed to ensure that data and results are kept accessible for children when needed for their care
Original languageEnglish
Publication date2019
Publication statusPublished - 2019
EventHealthcare disparities: Disruptive healthcare technologies and the patient - University of Manchester, Manchester, United Kingdom
Duration: 13 Jun 201914 Jun 2019


ConferenceHealthcare disparities: Disruptive healthcare technologies and the patient
LocationUniversity of Manchester
CountryUnited Kingdom

ID: 222759524