Legal and Ethical Issues Surrounding the Use of Older Children’s Electronic Personal Health Records

Aims & Method: This literature review and discussion examined the legal and ethical issues arising from electronic health records for children over 14-years of age. The review examined peer-reviewed articles, grey literature (key agency reports and policy documents), legislation relating to MyHR and relevant case law.

Results: Parental access to the health records of their children aged 14+ raised three key legal and ethical concerns relating to:

1. Capacity, consent and competency issues
2. Privacy and confidentiality concerns, and
3. The tension between the rights and responsibilities of the parent and child.

As it stands, the MyHR legislation requires that children obtain special permission to control their own record. This permission is only given if a child is deemed capable of making their own decisions, though it is unclear how this capability is determined. Legal capacity is currently presumed for children over 14 years of age.

Privacy and confidentiality issues relating to access to information stroed in an electronic health record are greater for children. Children may not have the same opportunity to decide who can see their sensitive medical information and face more severe consequences should their privacy be breached. The opt-in MyHR system limits the child’s choice regarding automatic upload of their records as, in most circumstances, they must have an Authorised Representative opt out on their behalf. With a parent as the Authorised Representative, further issues arise as parents have unrestricted access to information that the child may wish to keep private. A conflict therefore exists between the rights of the child and responsibilities of the parent.

Implications: Children and their parents may lack awareness and hold negative attitudes towards MyHR which limit their meaningful participation. Better information is therefore needed. As older children have the capacity to manage their own records, resources provided to MyHR consumers need to be expanded to target the specific information needs of this population.

Our onward queries: The opt-in system will provide all Australians with a My Health Record unless they choose to opt out. However, children are a group that will require individual support to ensure they can maintain their right to privacy. How do parents and children, particularly those with developmental and communication disabilities, view these changes to MyHR?

Full reference of article:
Meredith, J., McCarthy, S., & Hemsley, B. (2018). Legal and Ethical Issues Surrounding the Use of Older Children’s Electronic Personal Health Records. Journal of Law and Medicine, 25(4), 1042-1055.

Link to article on publisher page: http://sites.thomsonreuters.com.au/journals/tag/legal-and-ethical-issues-concerning-childrens-electronic-personal-health-records/