This morning, just for a change, we went to another hospital for a genetics follow up to the wife’s breast cancer. In France they are very keen on prophylactic measures and like to test things in a lab wherever possible. The wife’s blood is going to be screened for genetic predisposition to breast and ovarian cancer. The results will have implications for her and her siblings, including the men. In French law the geneticist or the wife herself MUST inform her brother if the tests suggest that he too might have a predisposition for cancer. This true for if he lived in France not sure if it extends legally to the UK. The form letter on the government site, for the geneticist to fill in, does not really hide the identity of the provider of genetic material very well. Today she advised against sending this. It was better to pass on the tidings of joy personally.

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« Décret n° 2013-527 du 20 juin 2013 relatif aux conditions de mise en œuvre de l’information de la parentèle dans le cadre d’un examen des caractéristiques génétiques à finalité médicale.

Notice : la loi no 2011-814 du 7 juillet 2011 relative à la bioéthique a modifié le dispositif d’information de la parentèle dans le cadre d’un examen des caractéristiques génétiques introduit par la loi no 2004-800 du 6 août 2004 relative à la bioéthique. La personne concernée est informée, avant la réalisation de l’examen de ses caractéristiques génétiques, de l’obligation qui pèse sur elle, au cas où une anomalie génétique grave serait diagnostiquée, d’informer les membres de sa famille potentiellement concernés dès lors que des mesures de prévention ou de soins peuvent leur être proposées. »

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The gastroenterologist following my colon cancer has been very pushy about me notifying blood relatives because there is some genetic component to colon cancer.

I have already tested for HBA B27 which was negative therefore there are no requirements for notification. There are no possible interventions foreseen.

I am considering HFE and JAK poly screening, the latter of which costs ~€1500. The HFE if positive would indicate hereditary Haemochromatosis which can have interventions. The JAK poly screening for predisposition to malignancies, would if positive, require notification. There would under law be an obligation to inform.

This explains why the GP isn’t overly keen. There is a possible can of worms attached.

The documentation for the test today has inherent in it an authorisation to share genetic test results with relatives if relevant to their healthcare.

Given the price of the test, I am likely to need a specialist to write the JAK screening prescription. They may well want a “who do you think you are” family tree.

You learn something every day…and given the French love of protocol this is non-negotiable.

There are often implications we do not consider…and only find subsequently.

Once you have had test results you cannot un-have them or un-see them…

Hmnn…