Blog: We have the public to thank for this week’s well-informed decisions in health research

We have had two pieces of good news about health research of patient benefit this week.

First, the National Institute for Health and Care Excellence (NICE) issued new guidance saying that tamoxifen or raloxifene taken daily for five years can cut breast cancer risk by 40%.  This means women at risk of developing breast cancer have a choice other than mastectomy. There is a good BBC news piece here if you are interested.

Then, this morning, the Chief Medical Officer Professor Dame Sally Davies told BBC 4′ s ‘Today’ programme that the government will be putting new regulations in front of parliament later this year that would give the go-ahead for what is called ‘three-person IVF’ to enable children to be born without genetically inherited mitochondrial disease.  Parliament is to be given a free vote when the legislation comes before it.  Ian Semple’s article in The Guardian today is a good summary.

Both are extremely important announcements.  Each has been accompanied by debate in our media about the pros and cons.  I am sure this will continue.  But more significant are the decisions these will enable families to take where, in the past, there has been little if no choice.  I can only imagine the sense of empowerment that brings.  However, we must be sure that people have the full facts and information in front of them when considering their options. Whatever their decision, they must also feel that their choice and the reasons underpinning it are respected by professionals, colleagues and friends.

In my opinion these feel like well-informed announcements from a patient perspective, developments that the public should have confidence in.

Quite apart from the fact that NICE’s decision is based on evidence from large-scale clinical trials involving thousands of women, you may wish to have a look on their web pages at how they reached their decision.  As with all its guidelines there was an extensive period of evidence gathering and consultation.  And it is worth mentioning that the Clinical Guidelines Group (CDG) that took looked in detail at this included three patients/carers among its membership.

In terms of the ‘three-person IVF’ move, this has been pre-dated by months of debate including an extensive public dialogue exercise run by the relevant regulator, the Human Fertilisation and Embryo Authority (HFEA).  You can see the results of this exercise led by Sciencewise and also the recommendations made by HFEA to the Department of Health here.  No, it didn’t say that everyone supported the idea.  But in what I thought was a very well framed document, it said that the overwhelming opinion to emerge understood the benefits from a societal and patient perspective.  And on this basis that such procedures could and should be licensed.

Seems to me that when asked, and given time, the public are rather good on this issue at blowing away the smoke that others are keen to blow into our eyes.

 

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