Genetic disease and the right to know

There was an interesting article in The Times today and in the TimesOnline where the GMC proposes that doctors will be obliged to inform relatives about a risk to their health when a patient is found to have a genetic disease. However, it points out the disadvantage that adopted children will have.

“Despite calls from some campaigners for a change in the law, adopted children do not have a legal right to learn details of their biological relatives’ health records, even if such details are relevant to their own future health”. (TimesOnline 26.09.09) Not only adopted children are affected by this. Donor offspring conceived in the 20^th Century do have not recourse to 50% of their genetic records. There are far more of us than you imagine!

As someone who has suffered from cancer in the past, and now lymphoma, I would like access to these records. But they have not only been deliberately withheld from me and others like me, but in most cases deliberately destroyed. These records are not just relevant to me but to my offspring and future generations.

Not knowing about my conception has meant that unwittingly I have given false information to insurers and medical practitioners about my family history. As this article makes clear “Genetics is predicted to become an increasingly important branch of medicine as the underlying causes of more and more diseases are linked to an individual’s family history”.

Whilst secrecy in the past may have been used to cover up male infertility and male pride for God’s sake let’s think now about the offspring – not about their pride – but about their lives and the lives of future generations!