Our family experienced a devastating loss when our 44-year-old daughter died due to the BRCA gene. She left a grieving husband and two young children. Our family will never recover from the loss.

Our grief was further compounded by the realisation that the life-threatening gene had already been identified in her maternal family several years before but they had chosen to keep the information secret. Her aunt knew of the existence of the gene when she had herself, her daughter, and her mother (our daughter’s grandmother) tested. Aunt and daughter were clear, but grandmother was positive. But they kept it a secret from her too – they thought it was kinder.

Our personal tragedy underscores the urgency of implementing legislation whereby the medical profession keeps data confidentially and securely on victims of similar inheritable diseases. Families are ignorant of the risk, people become estranged, are adopted, divorced, or emigrate. Any one of these scenarios could mean a vital opportunity to save a life is lost. Information is power; prevention is better than cure and much cheaper for the NHS!

We believe everyone now and, in the future, has the right to know if they are at risk from an inheritable genetic illness. We urge lawmakers to introduce legislation to allow sharing of such data, but only within the medical profession.

The Human Rights Act refers to the right to life and, also, to personal security and privacy. This clash in objectives needs to be resolved, as it stands in the way of information sharing that could reach those who, via their medical advisors, could benefit from the knowledge. People may be living their lives blissfully unaware that they have a ticking time bomb in their bodies. 

Please sign this petition to help save lives by preventing tragedies like ours from ever happening again. Please click on this link to learn more about how our family was impacted. 

https://youtu.be/3JUWNXjC010?si=12XpkiQnYQ0_6DJF

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