Inside the Ethics Committee this morning (18th August)

[Sixweekstowait]

Did anyone listen to this? It was about the rights of people to know that they are at risk of an hereditary illness versus the rights of the parents to keep this secret and to whom, in this situation, a doctor owes his/her professional duty of care and confidentiality. The most interesting case was a woman who has not leave to appeal to sue doctors for not telling her her father had Huntingdons. By the time she found out, she had already had a little boy and when she was then tested, she found she had the gene. It raised so many issues, I'd be really interested in discussing with others. I'll put a link up

Apologies - it should be Huntington's of course. Hope this link workswww.bbc.co.uk/programmes/b07nrxd4

www.bbc.co.uk/programmes/b07nrxd4

I suppose the issue is that the doctors have a right of confidentiality in relation to the father, and that all they can do is advise the father to tell his daughter. Is that right? Is it the position that in law the right of confidentiality outweighs everything else?

What complicated this particular case was that the father murdered someone ( I think another family member) because of the effects of the HC. He was deemed to have 'diminished responsibility' - the daughter's argument, that I admit I have sympathy with, is that the legal system treated him in one way (rightly imo) and yet medical professionals argued he had capacity to refuse consent for his daughter to be told he had HC.

it depends I think on whether what you are keeping quiet actually puts someone else at risk like not telling a partner you are HIV+ as it could affect their consent to sex and /or relationship. I believe it has already been subject to a court case and a person can not demand that a doctor does not tell his partner that he is HIV as they have a right to know

However a maybe /maybe not inherited disease is different as if it has been past on the damage has already been done and can't be mitigated though someone could decide to have no further children or remain childless themselves it would not alter it for them, in some cases people would prefer not to know therefore it is much less clear cut

I was quite shocked that they linked HD so strongly to the death of the relative. Plenty of people have HD and are not responsible for the death of another person. Maybe it was a catalyst rather than a cause?

I carry the HD gene and have always been very open about it but I totally understand why people choose to cover it up. It was covered up in my family until I was 16y. I can totally see both sides of the case so it will be interesting to see what the outcome of the case is.

I suppose the unborn child (woman's son) has no legal rights, there are goods & bads because of that. So there was no duty to tell the woman to prevent the child being born with this condition. The woman could die of something else, or might not have the gene; all of us hypothetically might have dodgy genes, can't make decisions based on hypothetical conditions.

Glad I'm not a lawyer!!

Mner- yes. I wondered about that. But it did seem that the 'system' is having it both ways - mentally competent for one thing and not for another. Medical confidentiality is not absolute anyway is it? Think child abuse or telling your psychiatrist you are planning to kill a specific person - I just think there is a debate to be had that a doctor has a duty to others and not just to the direct patient in other circumstances as well

It's a fundamental legal principle that the issue of capacity is issue-specific. It's recognised, for example, that people may have capacity to live independently (so that they don't need to be sectioned) but not to look after their finances or conduct a complex legal case. Therefore it's not at all unusual for someone to be deemed mentally competent for some purposes but fine for others.

Additionally, if someone is convicted of manslaughter instead of murder due to diminished responsibility, it can be the position that they don't have diminished responsibility all the time. For instance, someone who has bipolar disease may not be able to control his actions during manic phases when off medication but may function perfectly normally most of the time.

Pretty much what Judy said ....but I think that they did touch on the Father having diminished responsibility for the crime as he was not receiving care or treatment.

He later was deemed to have the capacity to make medical decisions as he was receiving the treatment and care which enabled him to recover as much as is able with HD, and the criteria is lower in medical terms than would be in legal terms.

It seems to be an absolute mine field. I could see from both points of view. It seemed too late for the daughters diagnosis, but it could have prevented her son from carrying the gene.

I was also surprised that the majority of people did not want to have the testing to see if they were carriers, I thought it would be the other way round.

I didn't used to want the test results at all. I just wanted to get on with my life, and ignore it. I was absolutely adamant for the first 5 years of knowing about having HD in the family.

And then one day I just woke up and something had changed, and I really wanted to know. The change was so sudden and dramatic, I actually waited another 2 yrs to be sure I wanted to know.

I have never regretted having the test. But if you do find out and it is positive and it is too much to deal with, you can't take that knowledge away.

Interesting points about tests of capacity being issue specific. I'm still struggling with the imbalance of rights though in medical situations where there are genetic issues for the next generations. And even if having children wasn't an issue, there are all sorts of life decisions you might make differently if you knew you might have inherited a particular condition. I am really struggling with the ethical position that only the parent has rights in this situation and that a doctor's duty of care and confidentiality is limited to that parent as his/her patient. It will be interesting to see how the legal action developed next year. Medical ethics are not fixed - there have been changes over time for example, the patient's right to know if they are terminally ill - at one time, often the family would be told but not the patient.