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Whose body? Legal issues and religious beliefs in England

Whose body? Legal issues and religious beliefs in England

By Judi Sture
Special to VIRTUEONLINE
www.virtueonline.org
May 25, 2020

Are you aware that if you die tomorrow, as an adult in England, your organs and any other bits someone in the NHS takes a fancy to, can be 'harvested' for the use of others? Whether you want this or not? Wales enacted similar legislation in 2015 and Scotland is planning to do so in 2021. Northern Ireland retains an opt-in system -- I would hazard a guess that this is due to the remaining influence of religious belief in public life there.

There are at least three relevant ethical issues here. Firstly, presumed consent, which is not informed consent, nor can it be universally applied. Secondly, voluntary participation. Thirdly, the 'do no harm' principle. This law change in England potentially violates all three principles. There is also the issue of respect for religious belief that is at risk here. Let's have a look.

Last week, on 20 May 2020, the law in England changed so that all adults in England are now considered to have consented to donate their organs after death unless they have opted out. Got that? I didn't see any news items on TV or radio about this. Perhaps I just missed it. After all, with Covid-19 dominating the news now for months, it could be argued that organ donation issues are not exactly top of the current agenda (unless you are awaiting a donor).

Even so, why is it that there has not been more discussion and publicity about this important law change? Could it be that those in authority in public health and the government simply don't want us to be too aware of this change? What is going to happen once families wake up to the new 'ownership' of the body of their deceased loved one as a surgeon lawfully whisks out their kidneys, liver, heart, corneas or goodness knows what else? Is there a grace period during which families who were not aware of the change can object? Simple answer: no.

This new law, like many devised for or after heavily-publicised cases of a heart-wrenching nature, is also known as 'Max and Keira's law'. Presumably this makes it harder to complain about whatever the law is, given that it is associated with a small child or similar. Who wants to be seen as heartless (no pun intended)?

According to the BBC, nine-year-old Keira Ball saved four lives, including that of Max Johnson, also nine, after her father allowed doctors to use her organs for transplants after a car crash in 2017. This is, of course, to be highly applauded and admired. We can only look on in amazement at any father who is strong enough to consent to such a magnanimous gesture while going through the worst trauma that can afflict a parent. Hats off to him. It must be said, however, that Keira did not save lives -- her father's brave decision did so. There is a difference. But even so, there are ethical issues here that seem to have been brushed under the table in the rush to acquire more organs for our burgeoning NHS waiting lists:

'Why has the law changed? The law has been changed to help save and improve more lives. Every day across the UK, someone dies waiting for a transplant'.

The last sentence there (from the NHS website) is actually not necessarily ethically relevant, even though it is socially relevant. Just because a situation exists does not mean that there has to be an answer. I accept that this sounds harsh, but ethics deals with often harsh concepts. We can't rush into solving ethical problems by making bigger ethical mistakes. What is needed here is the most ethically suitable way to deal with a lack of organs for transplant. This does not mean that we can necessarily do something to ensure that there is no lack of organs available. What we have here is the ethical rights of millions being put second to the ethical rights of a few hundred patients per annum. We are, of course, seeing similar ethical inversions in other social issues too.

It has been estimated that the law change will lead to an additional 700 transplants each year by 2023. If you are a patient awaiting a transplant this is obviously Good News. But what if you are the next of kin, spouse, parent or sibling of a person who has been subject to a sudden, unexpected death? The very nature of those circumstances is traumatic enough without suddenly finding that the body of your loved one is somehow public property -- in effect -- and that his or her bits and pieces are now fair game for someone else.

Most people in the UK are surprised to find that there has been no legal ownership of a dead body by their nearest and dearest even prior to this law change. It is a quirk of our law that once you are dead in the UK (I think I am right talking about the whole UK here), nobody owns the body. Instead, there are a number of people who are legally required to dispose of the body in an appropriate manner, or instruct for a post-mortem examination, or for some other treatment such as forensic investigations and so on. You and yours do not own your own dead body.

But wait -- now it appears that the NHS 'owns' it. While this has probably been the subject of a range of hermeneutic and semantic shenanigans in drawing up the legislation, we are left with the fact that someone else, approved by law, can help himself to your loved one's organs without his or your direct, informed consent. Is this right? I don't think so. Why?

Because I don't think it is right, just or fair to presume consent on behalf of another adult, or even of a child in these circumstances. In what other area of life do we support 'presumed consent' these days? Answer: few or none. We can't even get onto a website these days without clicking 'I agree' first. Why on earth are we supposed to have unknowingly clicked 'I agree' to having my organs taken out of my dead body? It is insufficient to say that we can 'opt out' unless we can be assured that everyone to whom the law applies has had a fair and timely chance to opt out. Where were the TV ads telling us about this law change? Where were the GP surgery signs about it? Where were the advertising boards in public spaces? How do you opt out if you don't have a computer? Or are illiterate? We managed to get a government pamphlet to every household in the country about Brexit but we can't do the same for something that affects all of our bodies.

What if you die and you have not opted out of the new presumed consent law? Perhaps you didn't know about it. Perhaps you though someone could object on your behalf. No. Your loved ones will be left with the fact that your bits and pieces may well be removed without your -- or their -- consent. If you are happy with this arrangement, then no problem. Good luck to you. But what if you are not?

Its only 30+ years since we had the Alder Hey scandal. Body parts and whole foetal bodies were kept at the children's hospital (and at others) for research purposes. This was not illegal at the time. Indeed, people's medically-removed organs, tissues and body fluids had been kept for research for decades in British hospitals without anyone knowing about it, or getting up set about it if they did. People accepted that medical research needed materials.

'[At Alder Hey].....The organs were stripped without permission from babies who died at the hospital between 1988-1996. Hospital staff also kept and stored 400 foetuses collected from hospital around the north west of England. The findings of an inquiry into the affair have been described by Health Secretary Alan Milburn as "grotesque" and helplines have been set up to deal with calls from distressed parents'. (BBC news website).

See the focus on consent here? This scandal ran for years and still has repercussions today. The notion that anyone could help themselves to body parts without parental or other consent was considered appalling. So what has changed?

Medical advances, that's what. And a changing population with a greater need for transplants. In a nutshell, we need more organs. The existing opt-in scheme is not sufficient, so it has to be changed. Apparently. This is where the ethical principle of voluntary participation is sidelined. Up until last week, in England, you participated in the organ donor scheme voluntarily by opting in. You signed a card and kept it in your wallet and told your family about it. I am sure we can all sympathize with those awaiting an organ. It must be awful. But there is no social rule that says 'just because you need an organ, one must be provided'. Were that the case, we would be taking an even more stringent approach to body ownership. Let's not even get into the use of foetal tissues in medical research and treatments here.

So due to this economic public health 'need', certain ethical principles appear to have changed to suit the climate. This is the wrong way around. Social climates are supposed to change in response to ethical needs. But now it is not only acceptable, it is required, that you consent to having your organs taken after your death. Not only that, you do not actually get to consent, you are assumed to have consented unless you opt out. This is nothing less than a wholesale negation of the principle of consent and of voluntary participation. Nobody can consent on behalf of a population. But this is what is happening.

Think about this for a moment. Our UK government and its successors, now have a legal right to parts of your body unless you have registered to say 'no'. But it is simply not right to presume consent has been given. If the individual is dead without having stated that they wish to be a donor, they can no longer give consent themselves. The whole point of organ donation is the 'voluntary gift' nature of the donation. Now the 'gift' nature of donation is gone, to be replaced with the 'economic necessity' demand.

How are families to handle this in cases where the deceased has not opted out, but the loved ones know that the deceased did not wish to be a donor, or simply don't know? The whole point of the dealings with death by families and friends has always been for the benefit of those left behind. That includes consideration for their social standing, their religious beliefs, their economic position and so on. Obviously the wishes of the deceased are usually taken into account as well, but once you're dead, you're dead. Unless you have arranged your own funeral, its left to those you loved in life. Most people naturally wish to give their loved one the best possible 'send off' in an appropriate (to them) manner. To many, this will mean 'intact' and not having had various bits removed.

The NHS organ donation website states:
'Your family will still be approached and your faith, beliefs and culture will continue to be respected'.

It does not specify how your faith, religious beliefs or culture will be 'respected' in practice. If you object, are the surgeons still going to go ahead and remove your loved one's organ(s)? How will that be done 'with respect'? Or are we to expect that certain groups will emerge who will soon gain an exemption from this law?

There is a list of 'excluded groups' on the NHS site, to which the presumed consent principle does not apply:

'Those under the age of 18; people who lack the mental capacity to understand the new arrangements and take the necessary action; visitors to England, and those not living here voluntarily; and people who have lived in England for less than 12 months before their death'.

Fair enough, but how long is it going to be before we see the first religious-based cases of dispute arising? And even of non-religious cases in which people object on behalf of their deceased loved one? What then? Are we going to see all religious groups treated equally? This is where the 'do no harm' principle is being violated. Crucially, who defines 'harm'?

There are many concepts on which a society as a whole can agree, including notions of personal autonomy, our many democratic freedoms and so on. But we are increasingly aware of the needs of minorities who have particular views on certain issues. One of these is the religious stance that says it is wrong to take body parts for the use of others or for research. To presume consent and voluntary participation for this is to cause harm to the deceased (in his own belief system) and to his loved ones left behind (their beliefs). How are we to meet this head-on? In the UK today a man can declare he is a woman and immediately be protected in his claim by the law. But now nobody can say 'hands off my body' unless they have formally opted out. The delights of equality.

Besides these ethical issues, what about the 'thin end of the wedge' argument? If the authorities now claim a right to parts of your dead body, how long before they claim a right to it while you are alive? Christians need to think long and hard about this. If you are happy to donate organs after your death, fine. But if you are not, what does this new opt-out system say for the value of your beliefs in society as a whole? It says they are not the norm, that's what. What happens if we are one day required to have our medical records, tax details or similar implanted on a chip in our body? Think you will be able to opt out of that? Not easily, when it is dressed up as 'The law has been changed to help save and improve more lives', or similar.

The fact is that our government has enacted legislation that rides roughshod over some vital ethical principles simply because there is an economic health need that is deemed more important than some people's beliefs. This is wrong. By all means, take action to recruit more organ donors via an opt-in system. But do not impose an opt-out system just to feed an economic public health need. Where will it end?

Judi Sture is a research ethics specialist and anthropologist.

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