Gene Testing – Would You, or Wouldn’t You?


There is a story in the news this week about Angelina Jolie who has had a double mastectomy to reduce her chances of developing breast cancer. She had a BRCA test and found she was a carrier of the faulty gene that gave her an 87% chance of developing the disease and now, post-mastectomy, her chances have been reduced to around 5%.

My question is this: Would you have a test to see if you had the faulty gene that could potentially raise your chances of developing cancer? And if you did have the test, what would you do about it if you tested positive?

This is one of those questions that raises itself from time to time as scientific advances are made, and gene testing becomes more common. The test that Angelina Jolie had is quite expensive (up to around $3000) and it is not covered by medical insurance in the US. There is a different system for testing here in the UK, and referrals to specialists are done by the family doctor (GP – General Practitioner) which don’t cost the patient at all providing there is a strong family history of the disease and there is a high chance the test will be positive.

So for some people, the cost of the test could be prohibitive and would put them off having it done, but if the test was offered to you free of charge, would you still have it?

I am fortunate that there is no history of breast cancer in my family which I think is something that colours my response to these questions, but if I broaden it to include tests for other hereditary health issues then I feel quite strongly that no, I wouldn’t have the test. Of course, my Christian faith also colours my view too. I believe that whatever will be, will be and however life pans out I am not alone in dealing with it. I am quite content to leave my chances at developing a particular disease, whether it is breast cancer or something else, to nature and to leave that set of worries and anxieties until symptoms appear and then deal with it at that stage. I wouldn’t want to go looking for problems that may or may not occur in the future.

Say that if I did have a test and it showed an 87% chance of developing breast cancer, then I see it that there is a 13% chance of NOT developing it. And that’s good enough for me! How I would feel if that was a real scenario for me, I couldn’t say, but I am confident that I can trust my doctor to refer me to  the appropriate specialist at the right time when and if symptoms present themselves. I am also confident that my family and friends would support me, as would my faith, should that situation arise.

And what about the next step? Angelina Jolie decided that she would have a double mastectomy to reduce her chances of developing breast cancer, but the key word here for me is “reduce” and not “eliminate”. I’m not a scientist or a biologist or a doctor, but speaking from my womanly viewpoint, I don’t think I could go through the trauma of such drastic surgery, especially if there was still an element of chance that I would still develop cancer. After all, if I was genetically predisposed to it then who is to say that 5% is enough of a chance NOT to develop it anyway? I know that removal of breast tissue means that there won’t be anywhere for the cancer to grow, but as men can develop breast cancer too and they don’t have the same sort of breast tissue as women, the chances of developing breast cancer is still possible. If it is in your biological make-up to be predisposed to cancer then I think you will get it whether or not you take steps to eliminate it before it develops. To only reduce my chances is not enough of a reason to go through such surgery.

Of course Angelina Jolie can afford top quality breast reconstruction surgery so perhaps for her that aspect of the process is different to most other women’s experience and may have been a deciding factor for her. I just don’t think I could go through it all and not be guaranteed to have eliminated all chances of developing breast cancer at the end of it. The anxiety over the test results, the surgery to remove the breasts, recovery, then more surgery to reconstruct them, recovery again, then mammogram after mammogram to see if cancer was developing in the years to come which would happen anyway if there was a  family history… it all seems a bit too much for me.

I do have to point out that I do respect those women who are facing this decision for real, and I would never advocate that people shouldn’t have surgery if they feel it is the right course of action for them. Every woman is different, with a different viewpoint and different expectations from life, and I am not making a judgement on anyone who wishes to do this. Whatever people decide to do will be exactly right for them – test or no test, surgery or no surgery. Everyone has their own particular set of circumstances and there is no right or wrong thing to do here.

You know my personal view, and I’m curious to know how you see this issue.

  • Would you have a genetic test to determine your chances of developing a particular disease or not?
  • Would you have surgery or other treatment if you tested positive?
  • Do you think we should just leave nature to take its course and trust the doctors to treat us if we develop problems later in life?
  • Do you think science has gone too far in genetic testing and is crossing an ethical line now?
  • Would you say science hasn’t gone far enough and there is much more work to be done on testing for more diseases and health issues?
  • Should we all be tested as a matter of routine?

Please drop me a comment and let me know how you respond.

If you would like some more information about breast cancer please click here to be directed to Cancer Research UK’s website. 

 

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8 thoughts on “Gene Testing – Would You, or Wouldn’t You?

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  1. I read the NY times opinion piece titled My Health Choice without even checking the by-line. I guess if like her I had a mom who died young I might very well opt for the testing. Beyond that I am totally unsure what choices I would make.
    In the touchy area of prenatal tests I am also mixed. I am old enough to remember it being common advice that women should have children before the age of 30 to lower risks. I certainly for myself considered that advice to follow. I was very sad to turn 30 and not have had a child. Between 30 – 36 I would have still have been willing to consider having a child but by age 40 I would have considered it foolish to attempt beating the increased odds of complications, not to get into the fact of having children it college with their parents in their 60s. But plenty of people have children in their 40s and 50s (more likely men in their 50s than women) without thinking it is an issue. In fact someone 10 years my junior stated firmly about a week ago that no one should consider children before age 30.

    Medical options change but medical risks remain. I will continue to keep that in mind with whatever medical testing or treatment choices I may face as I age.

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    1. Thank you for your comments. You raise the issue of pre-natal testing, which is something I hadn’t thought of when I wrote my post. My eldest child is 19 now and when I was expecting her there were very few tests available to find out about potential health problems with the baby. There was a standard 12 week scan (later changed to 20 weeks because the legal limit for abortions in the UK is 12 weeks and it was found that foetuses were being aborted based on sex in certain cases just after the 12 week scan. It was changed to protect “unwanted” baby girls…) and apart from that, the only other tests were on the mother – blood tests etc. The only time extra tests were done were on older mothers, the 40+ mums where Down’s Syndrome was a high risk due to age, but you could request that test if you wanted it. Nowadays there are so many more tests available as a matter of course for pre-natal mothers. I chose not to have tests because I was prepared to look after my child with any sort of health problem, and I am so blessed that both my children were born healthy.

      You have raised a great point there though, thank you for your contribution.

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  2. The first time I saw and thought about double mastectomies was a picture of a model – full frontal, no reconstruction. I was shocked but did read the accompanying story. Now, years later I find these women incredibly brave. Genetic predisposition is still an uncertain science and they are making a bold statement.
    If it were me?
    Ashley has a minor omission on one of his genes which may show a predisposition to epilepsy. We are up for gene tests as are, in time, our daughters to see if we are carriers – a fact which will affect our future grandchildren.
    Medicine is what it is and all options should be reviewed.
    If there was a reason for a gene test I’d take it. If there was a choice of treatments I’d consider my options and make the best decision.
    This touches a little on the taboo subject of Faith. For those with faith the Lord will provide. For those without empirical scientific tests and methods are trusted and pursued, with or without success.
    Sometimes I feel like I’m clutching at straws as we sign off on Ashley having tests, scans, and new medicines. But we try so hard to make the right decisions for him.
    Ms Jolie’s situation is different in that she has only one family member who has passed with breast cancer (in England you need several to pursue gene tests) and as you said the impact for her is minimised by her wealth.
    Thanks for the post. It’s made me think.

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    1. Thanks for your reply Dave, you’ve given me food for thought too!

      You are right when you say that science and medicine are of their time, and sometimes I think they wave magic “solutions” before they have been properly and rigorously tested over years and years. Maybe by the time our children’s children are faced with health problems then more tests and options will be available to them. With the will of God, they will also be armed with common-sense advice-giving grandparents too.

      It’s a total minefield and my heart goes out to you and your situation with Ashley. I don’t know how you manage to cope and keep a smile on your face each day! Well, I do know really….I read your blog most days 🙂

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  3. I do my best to stay away from doctors, clinics and hospitals as much as possible. If I do develop cancer or another life-threatening disease, I will deal with it at that time.

    In the meantime, I eat as healthy as possible and walk and hike frequently.

    To each their own. I do not judge those who choose a different path.

    I dealt with depression and seasonal affective disorder (SAD) in my 30s and 40s. Counseling with a psychologist helped a lot. She had me use a psychology book with all kinds of things to think about. I wish I could remember the name of it.

    Good blog today. Thanks.

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    1. Thank you for your comments Susan. I like your view that you would only cross those bridges when you come to them. Why go looking for trouble when it can find us very well without our help?!

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  4. So I took a medical ethics class last year, and we talked a bit about this subject. Here are my responses to your questions.
    Would you have a genetic test to determine your chances of developing a particular disease or not?
    – It would depend on the disease and the risk to benefit ratio of the test. I’d also recognize that no test has 100% accuracy – false positives and false negatives are quite possible. My scientist mind would want to know the sensitivity and selectivity of the test. If it gives a false positive 20% of the time how useful is it? Similarly, if it gives a false negative at a high rate, what really would be the benefit of getting tested?
    Would you have surgery or other treatment if you tested positive?
    -Again it would depend on the disease and the risk to benefit ratio of the treatment.
    Do you think we should just leave nature to take its course and trust the doctors to treat us if we develop problems later in life?
    -This is a hard one. As a Christian I believe that God is sovereign and that ultimately He is in control. However, I do firmly believe that knowing God is in control doesn’t relieve us of the responsibility to care for oneself -” Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies.” I also believe that God can and does work through modern medicine, so the answer to this question is I don’t know.
    Do you think science has gone too far in genetic testing and is crossing an ethical line now?
    -ABSOLUTELY! Every single person has some gene somewhere that is defective. Probably many. I think that genetic testing could quickly become discriminatory. With these cancer tests we are starting to get a little bit more into the grey area of “may get X” or “an increased risk of Y”. There are researchers who believe that there is a genetic component to many disorders such as schizophrenia, depression, etc. However those genetic factors are not black and white causes of those problems in the same way that a faulty CFTR gene leads to CF or a faulty HTT gene leads to Huntington’s. Genes that are believed to be associated with schizophrenia, depression etc are more loosely associated with those diseases, and there are many, many other factors (i.e. environmental ones) that are also responsible for whether or not someone develops one of those conditions. We talked in the med ethics class about the possibility that these “depression genes” could be screened for prenatally, and all the ethical issues that arise from that. As someone who strongly opposes abortion, and has a relative that has a genetic disorder that can be tested for prenatally and that some might abort over, I find it scary enough that people can abort based on a gene test for something like CF or T21, let alone the notion of people being able to find out that their baby has a mutation that might be associated with an increased risk of something later on.

    Another ethical issue is that genetic testing reveals information about others. Your genes are shared by your parents, siblings, grandparents, cousins etc. Your test might give information that they don’t want known/ don’t want to know. Apparently this is especially true in families affected by Huntington’s.

    Finally, another ethical problem is who should know the results of your genetic tests? Do you really want insurance companies to know that you have an increased risk of X, Y or Z? What about employers? Should they be able to access and find out that Joe Jones has a mutation at the ____ gene that increases his chances of developing ____?

    So many ethical questions are raised by genetic testing… (Not to say that there aren’t good applications of genetic tests, I just see several ethical issues that could arise.)
    Would you say science hasn’t gone far enough and there is much more work to be done on testing for more diseases and health issues?
    – Maybe…
    Should we all be tested as a matter of routine?
    – I think I made my opinion pretty clear already. 😉

    Sorry for writing such a book! I have some strong opinions on this, and the semester is done (I’m a university graduate now! Woo Hoo!) so I now have plenty of time to write long comments. (At least until graduate school starts.)

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    1. Thank you so much for taking the time to reply to my post, I’m very touched you would care so much!

      You’ve raised some GREAT points here, particularly when you say about the possibility of discrimination on the grounds of people not being screened before birth about certain diseases and conditions. I find it emotionally traumatic enough to know that certain fetus’s are being aborted on the grounds of gender but to think that decisions could be made on the chances of mutant genes (and not 100% certainties…) make me shudder. How are those kids whose parents couldn’t afford the tests supposed to feel growing up thinking they are inferior to those who have money?

      And I agree with your point about who should be entitled to know the results of the tests. Can you imagine a world where employers refuse to hire someone on the grounds that they have a predisposition to mental illness, say? I can see that there would be a time when humans would engineering themselves into being a super race, and that deeply troubles me.

      Thank you again for your contribution to my debate. Congratulations on graduating – here’s to a nice long summer til you start again! 🙂

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