Screening embryos for BRCA1/2: HFEA open meeting

Screening embryos for BRCA1/2: HFEA open meeting

Screening embryos for BRCA1/2: HFEA open meeting You may have seen items on the news about screening embryos for BRCA 1 and 2 - for example
timesonline.co.uk/article/0,2-2170864,00.html
I have discovered there is an open meeting of the Human Fertilisation and Embryology Authority in BELFAST this Wednesday (10th) to discuss this. It is at the Stormont Hotel at 10.00. I think this is something that those who have had breast cancer may have opinions on which the HFEA should hear before reaching a decision. I personally am very opposed to this as it seems to me to be saying that if one is going to get breast cancer one ought not to be allowed to live in the first place. However others may have very different views - and I thought those ilike myself who are in or accessible to Belfast might be interested to hear of this opportunity to have their voices heard.
The details of the meeting are at hfea.gov.uk/PublicEvent, where you can also find papers for the meeting.
Lishan

HFEA Meeting The impression I get from reading about it is that this meeting is for the HFEA to formally recommend screening based on the outcome of earlier public consultation. Breast Cancer Care invited its campaign panel members to comment on the proposal in November last year

What do people who’ve got the BRCA1 or BRCA2 genes think about embryo screening for these genes?

BRCA1 & 2 I tested positive for BRCA1 last year. My family has a very grim history of cancer - not just breast and ovarian - my father died of lung cancer and my grandfather of kidney cancer.

I don’t have children - was diagnosed with bc at 35 and have now had my ovaries removed so no chance in the future. I’ve been thinking about this since reading the article and am still in 2 minds.

I wish I’d known I carried BRCA1 sooner - I could have taken steps to avoid the diagnosis, surgery and treatment I’ve been through in the last 18 months. But at the same time, I hate the thought of this being some store of stigma that people feel the need to find out before bringing a child into the world. If my parents had known, would I be here? The thing to remember about the BRCA genes is that they only increase your chances your chances of getting cancer, they don’t mean you WILL get it.

Like I said, I’m still in 2 minds, so would be very interested to hear what others think…

Sue
x

I’m opposed! What right does anyone have to judge one person’s right to life over another? Who is to say that the embryo tested negative for this, and allowed to develop, won’t go on to have some other condition? Where does the screening end?
Even if someone does develop the disease, that person may still have had many years of precious life before doing so.
Being alive at all means we are all at risk of something and aren’t we meant to care for each other? Supposing we could have screened for other now survivable, controlable diseases years ago?
I have had several dear friends die from cancer as well as family members, but I would not have wished not to have known them.
That’s just my view, and I know there are practical and economic factors - I realise lots of people may feel very differently.- but I hope I don’t live to see an inhuman ‘designer race’ developed.
Judy xx

Thoughts I don’t have BRCA1 or 2 in my family so I don’t know if I’d feel the same if I did.

If you read and listen to what the media says, you would assume that carrying BRCA1 or 2 causes breast cancer. It doesn’t. We all have these genes, two BRCA1 (one on each chromosome #17) and two BRCA2 genes (one on each chromosome #13). They are believed to be tumour suppressor genes (therefore good). It is when they are defective that they increase risk of breast cancer because a line of defence has gone, and defective genes can be passed on to future generations.

My understanding is that it requires at least two DNA mutations for breast cancer to develop so we all have 2 “lives” unless we have BRCA1 or 2 in which case we have 1 “life”. As Sue says, having defective BRCA1 or 2 doesn’t mean you’ll automatically get breast cancer.

I think that offering parents embryo screening and possible destruction for defective BRCA1 & 2 is lazy science and I don’t agree with it. More work needs to be done to discover what other DNA mutations are causing breast cancer in affected families and then work out how to protect them so that people carrying the genes can live life free from the prospect of cancer. This research could also provide clues to what causes breast cancer that isn’t hereditary.

Breast Cancer incidence has increased dramatically since the early 1970s (by 80% in England and Wales) and it would be interesting to know whether the proportion of BRCA1/2 related cancers has kept pace or reduced. In theory, it should have reduced because of lower family sizes, therefore fewer inheritors of the defective gene. If it has increased at the same rate as other types of breast cancer, it demonstrates the significant effect of diet, environment and lifestyle as causes.

If we accept that it is OK to screen and destroy embryos carrying BRCA1 or 2, we implicitly accept that, if they were allowed to grow and be born, their lives would not be worth living. Do people reading this who carry BRCA1 or 2 feel that their lives have not been worth living?

Where does embryo screening end and who decides? If you take it to the extreme, you could phase out breast cancer almost entirely over a few generations. Just screen all embryos and destroy all the ones with XX chromosomes as 11% of them will get cancer in their lifetime and we know that being female predisposes them to breast cancer. This would leave about 300 cases of breast cancer per year - in men. Not sure how blokes would reproduce when we’d all gone. I’m sure they’d work out something Frankensteiny.

Would embryo screening for BRCA1 & 2 lead to just female embryos being destroyed? Men can carry BRCA2. Take the hypothetical example of three embryos from the same parents. They all carry BRCA2. Two are female, one male. Do you destroy the female ones and implant the male into his mother’s womb because he (presumably) has less risk of developing breast cancer than a female, although he is just as capable of passing on the gene?

If you read the sections in Dr Susan Love’s book on BRCA1 and BRCA2, you realise that there is so much more research that needs to be done in these areas. There may also be breast cancer genes that some of us carry that have not yet been discovered.

I think there is hope for the future that causes of breast cancer will be better understood and there will be ways in which all people at risk, whether BRCA1 or 2 carriers or not, can be protected from developing it. So why destroy embryos that could develop into people who could take advantage of future developments?

I think those of us who develop breast cancer are like the canaries the miners used to take down the pits to provide early warning of poisonous gas. We have provided early warning that there is something not right with late 20th Century and early 21st Century living and it’s related to diet, environment and lifestyle.

Let’s not forget that carrying defective BRCA1 or 2 does not cause breast cancer. It means you have lost one line of defence that protects you from getting breast cancer. If society accepts that it is OK to screen and destroy embryos carrying the defective genes, it means that society must accept that it is OK to screen and destroy any embryo that has damaged genes that would normally protect them from other diseases as well.

This means that we live in a society in which it is acceptable to destroy potential human beings who are known to be predisposed to developing certain diseases in their lifetime rather than acknowledging that natural selection ceased to play a part in human evolution a long time ago and that it should be possible to develop techniques to protect vulnerable individuals in their lifetime. Shouldn’t we expect to live in a humane society that acknowledges that nobody is genetically perfect and uses science to understand the causes of diseases and develop technology to protect vulnerable people and help them to lead fulfilling lives? Instead we live in a society that seems to be going down the path of adopting the easy, and, to many people, morally questionable policy of preventing disease with a screen and destroy policy for embryos.

I don’t want to let society off the hook. Unfortunately it seems that the decision to allow embryo screening and destruction for BRCA1 & 2 will be made today, so it’s too late. In theory this screen and destroy policy could reduce annual incidence by up to 2100 cases per year (5% of 42,000) but that assumes everyone that carries BRCA1 or 2 and who wants and can be a parent, chooses embryo screening. I don’t think that is the case. “Destroy” is an emotive word and was not used in the Times Article, but I make no apologies for using it. The reality is that embryos that are “defective” will be destroyed - either thrown away immediately or experimented on and then thrown away.

Final thought. It’s the 20th anniversary of Chernobyl. Facts are that cases of breast cancer have increased in the Ukraine, a radioactive cloud wafted over Western Europe, including the UK so, geographically, where’s the line beyond which cases of breast cancer since 1986 have no relationship to Chernobyl? Nobody ever says. It’s easier to deal with breast cancer by preventing embryos that are at risk from developing it from being born than face up to dealing with human activity that might have been a factor that caused some BRCA1 & 2 people to lose their one “life plus possibly affecting many of the rest of us as well. I’m not saying that Chernobyl has caused some increase in breast cancer incidence in the UK. I simply don’t know, but I wouldn’t be surprised if it had.

Checks approved I see that the fertility watchdog has decided to approve the checks today:

news.bbc.co.uk/1/hi/health/4756697.stm

I agree entirely with Daphne that these embryo checks are taking the easy way out. More research needs to be done into these defective genes - and of course into preventing all cancers generally.

I also agree with your point about implying that people with faulty BRCA genes shouldn’t have been born. Although I wish every day that I hadn’t developed breast cancer, I certainly don’t feel my live isn’t worth living.

It’s difficult for me to think too much about this today as my sister’s getting her BRCA1 results tomorrow and I’m worried sick, but will read everyone’s views with interest.

Sue
x

Thanks Daphne! for giving a more informed view - I don’t know enough facts about the subject to react other than emotionally, so I read your post with interest.
And good luck to you and your sister Sue - I was reading your other posts earlier. It’s horrible waiting!
My daughter(33) now has both sides of her family affected by bc. I don’t know whether she ought to have a test, but feel she may not want to.
Judy

Sue I’m thinking about you and your sister for tomorrow and also my thoughts are with everyone affected by BRCA1 and BRCA2. You experience feelings and make decisions that the rest of us are spared.

I can understand the dilemma about having the test. A positive result will change peoples’ lives and the Insurance Industry watches like vultures so that they can take the opportunity to wriggle out of providing insurance, if they can get away with it.

Here’s an article covering the latest position on insurance:

telegraph.co.uk/news/main.jhtml?xml=/news/2006/02/14/ncanc14.xml&sSheet=/news/2006/02/14/ixnewstop.html

Good news Hi Daphne & Judy,

Just wanted to let you know that my sister’s result came back normal today - so she’s not carrying the faulty BRCA1 gene.

So relieved!

Love
Sue
x

Hi Sue! So glad to hear your news! It must be such a relief to your family. Hope you can all at least put that worry behind you.
Take care and best of luck,
love Judy xx

Brca1&2 Hi all,
Sue I’m so pleased for your sister:).

I personally do not agree with aborting fetuses that have tested positive for brca1/2. There is no guarantee that even if they test positive they will go on to get cancer. I have 2 children, and although they have not found the culprit gene in our family I would not have made the decision (if I had been given the option) to not have my baby because he/she might go on and get cancer in their life. How long will it be before people are able to choose babies with the correct hair/eye colour, whether or not they might be obese etc? You know where I’m going with this right!

This is different, I believe, to babies who have conditions like cycstic fibrosis, huntingdons etc, because they do have a guaranteed death sentence. If they are carrying the genes they will definitely go on to have cystic fibrosis, huntingdons etc.

Be interesting to hear what everyone else thinks

take care
love
Justine
x

Sue Brilliant news - I’m really pleased for you and your sister.

Picking up Justine’s point about aborting foetuses that test postive for BRCA1 or 2, as I understand it, the test can only be done using IVF. I don’t think that they plan to test foetuses already in the womb, just embryos in “test tube”, then they decide which ones are OK to implant in the womb. Not sure whether there’s much distinction between aborting a foetus and destroying an embryo - either way it’s getting rid of something that has the potential to become a human being. Many people would say that the foetus/embryo is already a human being.

And good point Justine - making the distinction between genetic conditions which are terminal and those that aren’t. Breast Cancer is unpleasant, and families that carry the genes go through huge amounts of stress, but it is not a guaranteed death sentence.

Cautious welcome I broadly agree with BCC’s response to this news. I think it is important that the HFEA gives clear infromation to anyone seeking screening. Anyone considering screening out an embyro with a defective BRCA1 or BRCA2 gene needs to fully understand that the empryo will still have the usual lifetime risk of getting breast cancer.

Generally though I welcome the science which allows embryos to be screened so that those having IVF can make choices. I also think sreenning foetuses for genes is OK and that access to safe early abortion is a woman’s right.

I think gene reserach raises hard ethical issues, and I too am worried about the prospect of a Nazi style eugenics programme and the prospect of designer babies. Regeretably there are many other medical and cultural developments which encourage the production of designer people (just look at the prolieration of unnessessary cosmetic surgey…but thats another issue.)

I understand the anger which some disabled peopel may feel about the implication that screening for certain conditions signalling that those with the condidtions have lives ‘not worth living.’ We all need to challenge such thinking. I think its a non sequitor which stifles deabte.

I don’t have the defective BRCA genes (as far as I know…though I suspect more of us do carry it than we know…its just our ancestors illnesses are hazy or unknown…none of us can be very sure of WHO our ancestors were let alone what they died of)…though I think gene research will probably reveal far more defective genes than are yet known which are responsible for breast cancer.

Chernoble…yes awful to remember the anniversary and what an endictment of the excesses of totalitarian regimes and of global capitalism alike…and yes the increase in some kinds of cancers including breast cancer may be a direct result…but this again is another issue.

I know that some families have been devasttaed by numerous deaths from breast cancer because of the defective BRCA geneand I think the news of this screening possibility is good news. The solution to cancer in general and breast cancer in particular will not be found in one giant leap forward but in thousands of little steps…not enough to save many of our lives maybe…but all the little steps will make a difference to our children and our grandchildren.

Jane

Society’s canaries I must say that, despite the seriousness of this thread, the thought of breast cancer sufferers being ‘society’s canaries’ did make me smile so thanks for that.

Like JaneRA, I do not want to dismiss the ability to screen out the BRCA gene out of hand. Like most things it rather depends on what we, as a society, decide to do with the new knowledge and how we implement its benefits that matters. Let’s keep the debate going alongside the research, but don’t reject the research until we know more about its implications.

Blondie

I would screen for BRCA1/2 I say that because I have just gone through treatment for breast cancer (Stage 2, grade3, er-/pr-/her2-) and I have nine embryos on ice that hopefully I will get to use in 2 years time.

The reason I say that I would screen for BRCA1/2 is that the stats (50-85% lifetime risk of bc for BRCA1/2 carriers) are so bleak that I would not be able to face any daughter of mine that had to go through what I have just experienced.

That said, I have asked for BRCA1/2 testing for myself, so that I can add that to my decision. If I test negative, there’s no need to test the embryos. If I tested positive, I would probably get the embryos tested and would choose those female or male that were not carriers (men can carry the gene too, so there is no gender bias in my decision).

I’ve watched my mother worry and suffer about me, so I wouldn’t feel right loading the dice for a child of mine. It would be like using my child as a test case to see how fast medical science could catch up.

Just thought I’d put the other side of the case, I’ve read all your posts thoughtfully and will keep them in mind for the future,

Tina x