Abstract
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
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 language | English |
|---|---|
| Publication date | 2019 |
| Publication status | Published - 2019 |
| Event | Healthcare disparities: Disruptive healthcare technologies and the patient - University of Manchester, Manchester, United Kingdom Duration: 13 Jun 2019 → 14 Jun 2019 |
Conference
| Conference | Healthcare disparities: Disruptive healthcare technologies and the patient |
|---|---|
| Location | University of Manchester |
| Country/Territory | United Kingdom |
| City | Manchester |
| Period | 13/06/2019 → 14/06/2019 |