Listeners were led through an insightful discussion on the importance of children's health and family health history throughout the process of adoption and fostering during the latest British Society for Genetic Medicine (BSGM) online Lunch and Learn event – Adoption, Fostering and Kinship Care.
Hosted by the BSGM, each Lunch and Learn event presents an opportunity for members of society to come together and learn about topics of interest within the space of genetics and genomics. Leading the discussion was Ellie Johnson, a health consultant at CoramBAAF, who clearly and concisely managed to shine light on the necessary contact between medical advisers for adoption and clinical genetics teams.
To bring all listeners up to speed, the session began with an explanation of CoramBAAF itself. A UK-based membership organisation for professionals working across adoption, fostering and kinship care, CoramBAFF strives to provide best practice guidance, training and resources to its members. As a health consultant, Johnson explained that her work primarily revolves around supporting medical advisers for adoption and fostering.
The session then transitioned into a presentation of various quotations that directly addressed the sensitive nature of adoption, fostering, and kinship care. By reading out these quotations, Johnson put feelings of disconnectedness, isolation, resentfulness, and uncertainty felt among adoptees at the forefront of this discussion. Framing the event in this way correctly put affected children and young people at the heart of the conversation and reminded listeners to practice self-care when engaging with the material. One final quotation, taken from a relevant publication in the Lead, homed in on the topic at hand and stated that when it comes to adoption in the UK, the adoptee and their doctor are 'flying blind'.
Why might this be? Johnson explained that a process for collating and assessing health information for children on the adoption journey has existed for many years. This lends itself to a vast amount of adoption legislation and regulations that give adoption agencies specific responsibilities.
To generate assessments and reports on the health of potential adoptees, medical advisers aim to collate health information spanning pre-birth through to a full medical record, as well as any available family medical history. These health reports help agencies identify suitable families or carers and ensure alternative carers can meet the medical needs of each child or young person. Despite having this framework, Johnson admits that 'gaps' sometimes occur in this process, which result in adoptees not having access to their own medical information.
Before addressing possible reasons for this, Johnson first discussed the myriad of scenarios that may require a medical adviser to seek advice from genetics colleagues. A genetics consultation may be the result of a specific clinical presentation in the child, medical information received about a close biological relative of the child, or the need to relay genetic results to an adoption panel or prospective carers.
Johnson pointed out that reasons for a genetics consultation are unfortunately not always straightforward. On occasion, adoption agencies or social workers may directly request genetic testing. Concerningly, social workers may seek genetic testing to make a child 'more adoptable' or to help clarify the ethnic background of a child. Clinical genetics teams may additionally be consulted if a severe genetic condition, such as Huntington's disease, is revealed to run in the family of an adult applying to foster or adopt.
The session then circled back to further explore possible reasoning behind adult adoptees not having access to their medical information. Strikingly, Johnson pointed out that when the final adoption order is granted in England, a new NHS number is issued, and a new medical record is opened. As a consequence, access to medical records linked to the original NHS number may be lost – a phenomenon termed 'The Empty File Syndrome.' This issue has spurred numerous ongoing efforts aimed at addressing and resolving the problem. Beyond this, Johnson additionally explained that absent consent from birth parents or other complexities sharing information may contribute to existing access issues.
With over 100,000 children in care in the UK, Johnson opted to round out the session with various trends presently being observed within the space of adoption and social care. In the context of genetics, Johnson highlighted the 'increased chance that birth parents' whereabouts will be known and contact possible', while acknowledging that these situations will likely remain 'very complex'. Johnson then wrapped up the webinar by reassuring listeners that medical advisers receive the training necessary to handle complex genetics cases and are advised to remain up to date with the latest advances in genetics.
Having had under half an hour to flesh out the intricacies and implications of this topic, Johnson closed the session with a very short Q&A touching on lingering questions from audience members. Although the session could have benefitted from being slightly longer to accommodate further questions, Johnson succeeded in providing listeners with abundant insights in the allotted time-frame.
In the wake of expanding genetic technologies and advances in the field of genomics, this online event was an apt and informative discussion of the complex and varied reasons health records are so important to children and young people in adoption, fostering and kinship care. As someone who had little prior knowledge of the interactions between medical advisers for adoption and clinical genetics colleagues, I recommend this thought-provoking and accessible online event to all those interested in learning more on the subject.
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