Taking tissue samples without consent


by Rumbold
21st October, 2008 at 2:50 pm    

There has been much written about the upcoming vote on the Human Fertilisation and Embryology Bill, especially about the proposal to liberalise abortion further in Northern Ireland. Sarah however has spotted a little-discussed government amendment, which, if passed, raises a serious issue of medical ethics (ironically a restriction of same right that the government wishes to defend; namely the right of a person to decide what happens to their own body).

If the amendment is passed, tissue samples for creating human/animal embroys can be taken from people who are not considered mentally capable of making their own decisions. Now, obviously there are some areas (such as financial ones), in which it is right for carers/relatives to have a degree of control, as that might be the only practical situation. I cannot, however, see any rationale for this. As Sarah points out:

Leading learning disability charities said they knew little about this amendment to the Bill, which has, not surprisingly, received very little publicity… if this amendment to the Bill is passed on Wednesday, it will not only sweep away 25 years of progress in medical ethics. It will also sweep away too many years of hard work by Disability Rights campaigners to convince the mainstream world that we are human, too, and that they should do Nothing About Us, Without Us.


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Filed in: Civil liberties,Current affairs,Science






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  1. sarah — on 21st October, 2008 at 8:30 pm  

    Thanks a lot for this post!

  2. persephone — on 22nd October, 2008 at 11:11 am  

    I hope this amendment does not go through but if the person/their family has drawn up an enduring power of attorney (or now called lasting powers of attorney) they can include a clause with their wishes – the medical ethics committee would have to abide by such a document

    Perhaps disability orgn’s & all other relevant orgn’s (and I know the Alzheimers Soc do) should proactively provide guides on setting such documents up

  3. douglas clark — on 22nd October, 2008 at 11:24 am  

    Rumbold,

    There is an interesting article by Unity over at Liberal Conspiracy about this. As usual, he makes some interesting points.

    http://www.liberalconspiracy.org/2008/10/22/consent-and-capacity/

    The question I have for both Sarah and you is whether or not his final proposals would cover your objections.

  4. sarah — on 22nd October, 2008 at 9:37 pm  

    Yes and no, douglas clark. Of course Unity makes some good points. And his suggestion that people working in disability should have a say in making these suggestions for those who can’t would help, but the fact is, even if a human can’t make decisions for themselves, they are still human and still have the basic human right not to have these important decisions made for them.

  5. douglas clark — on 22nd October, 2008 at 10:40 pm  

    sarah,

    Thanks for replying.

    I’m frankly not sure where I stand on this. It is a major ethical dilemma. If a person is in a vegetative state, and a swab would be sufficient to help others in the same Cinderella area as their particular illness, should that be allowed or not?

    If there is a common good, the answer should be yes, I think. If the person is not disadvantaged in any way, then why not?

    But, I do genuinely fear legislation creep, where, good intentions are bent to ends that were never meant.

    Can I quote you what Unity said:

    That said, even though the safeguards seem solid on paper, as far as I can see, questions remains as to how successfully they’ll operate in practice and with that in mind the one thing I can think of that might help to allay Sarah’s entirely legitimate concerns would be the inclusion of one of more individuals from the field of disability rights on the licensing authority responsible for overseeing this research, someone with a specific remit to speak for those who cannot speak for themselves.

    So, without being absolutist, unless and until those involved in disablity rights were themselves the majority of the licensing authority, then I’d hesitate to agree to this whole idea. But, frankly someone has to be responsible for the moral wishes of the comatose patient. And assuming that there are no circumstances in which they would have given consent is as extreme, I would think, as assuming that they wouldn’t.

  6. Rumbold — on 23rd October, 2008 at 2:36 pm  

    Douglas:

    Unity, as always, makes some excellent points. I agree with him that the procedure would be relatively rare, and I am glad that he pointed out that it would be simply and easy. However, it is still fundamentally wrong. On a personal level, if I was a vegetable, I would have no problem with people taking samples from me and using them for whatever they wanted. But some people would have real problems with that, and I don’t feel that the justification is there.

    And this isn’t just about people, say, in comas. There are plenty of people with mental and physical disabilities who are not considered mentally capable, either by the state or society, of making decisions for themselves, because they are considered to have the mental age of a child. Whilst carers/guardians should be able to overrule their charges in some matters, such as financial ones (you don’t want a system which lets a 30 year old with a mental age of five get a credit card, and then the guardian not be able to cancel it), I really can’t see that it is in the interests of the disabled person to have tissue samples taken without their consent.

  7. douglas clark — on 23rd October, 2008 at 3:29 pm  

    Rumbold,

    But you are making an absolutist case, which I am attempting to avoid. And you are also avoiding the very idea that there might be a common good.

    All I’m saying is that I don’t want to go there.

    I thought Unity made an eloquent case where there are illnesses that only a handful or so of folk worldwide suffer. If the only way to investigate that illness is through mouth swabs or the like, it seems unreasonable for you and Sarah to assume that the fellow victim would not, if capable, give consent. In other words you are making an assumption that neither of you can justify.

    In cases where the illness does not necessarily effect the persons mental faculties, consent, or not, can be easily obtained from thee or me. Which, I’d assume was the norm.

    Frankly if we do not allow medical science to progress through expirement we are condemning future generations to continue to bear this, albeit statistically small but devestating, burden.

    My concern would be to obtain cast iron guarantees that the material gathered would only be used for the investigation and treatment of the illness.

    Still and all, the DNA database that security agencies are establishing is probably a bigger and more immediate concern. I believe they obtain that by swabs too.

  8. Rumbold — on 23rd October, 2008 at 5:05 pm  

    Douglas:

    I think that we are both approaching the topic from our natural philosophical viewpoints. As an individualist, the rights of the individual are the most important to me, so I don’t presume consent for anything without express authorisation. You take a more communalist approach (that’s not meant to be an insult), and give more weight to what you would consider to be the ‘greater good’. I understand and sympathise with the need for scientific experiment, but at what point does that stop? Where do we draw the line? Should we be able to experiment on disabled people without their consent, for the betterment of society (I know you don’t believe that, but I suspect that some would argue for it)?

    If someone is unable to give consent (remember, they might be conscious), then surely the law should ensure that they do not have to do it. I am not making an assumption about people’s beliefs; you are, because my law wouldn’t force people to donate their tissue to something they hadn’t given consent to.

  9. Don — on 23rd October, 2008 at 6:27 pm  

    Gosh, this is a tricky one. In a situation where someone is comatose or has succumbed to a condition which prevented them making their wishes known then I would favour some form of advocacy involving people close to the person. In most cases, I suspect, it would be fairly straightforward. Person A carried a donor card, gave blood and was known to their friends as an enthusiast for scientific advance, family and friends are confident they would have said ‘Go for it.’, then go for it. Person B was a JW and was known to be concerned about ‘Frankenstein science’, then back off.

    But where no information is available, or where the patient has never developed the cognitive ability to express a view, then I think I come down on Rumbold’s side of the fence. It’s one thing to deduce consent from actual information, another to assume it as a default.

    If someone took a swab from my unconcious form to help erradicate an ailment, I’d be fine with that and anyone who knows me would know that. If they wanted it to develop something I consider morally abhorent (some form of biological weapon, say) then I would be very much opposed, in fact I’d be livid. Somebody else (Rumsfeld?) might be cool with it. There are those who consider some areas of medical research morally wrong: I might disagree strongly but it’s their body and their call.

    In my line of work issues of ability to give meaningful consent and of responsible and ethical advocacy are a constant concern. Our policy is ‘never assume’ but not all professional colleagues see it quite that way. People with disabilities, and those who are their advocates, have sound historical reasons to be cautious about policies which put the greater good over their individuality.

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