Tag Archives: medical decision-making

In Depth: Presuming Consent in Organ Donation- Part Two (Electric Boogaloo)

27 Nov
 
Here, at last, is the second part of this post. It was unavoidably delayed by a combination of sudden busyness and industry on my part, but I’m sure that wont be a problem in the future. This part carries directly on from the first, which can be found HERE. There, I looked at the normative ethics of presumed consent, and here, I’m going to look at the legal standpoints involved.
 

The last post brings me to address another contentious issue inherent to a policy of presumed consent for post-mortem organ donation, which is that to have any moral authority over the populace, legislation must assume that all those within its remit actively engage with it. Such a concept is enshrined in UK law through the Human Tissues Act (HTA) 2004, the “guidance [of which] is clear that consent is a positive rather than a passive process”. That is to say that in the milieu of the proposed system the term ‘presumed’ is perhaps inaccurate, and instead the system operates on the basis that “consent can be given implicitly, by one’s actions, so it is argued that the failure to register an objection (given certain background conditions) should itself be taken as sign of consent”, which maybe implies that inaction is itself a defined action. I’d venture, however, that this approach could be seen as objectionable and liable to meet with challenge by the public in the actual event of its invocation. Furthermore, in the instance of UK law, a proposal on this basis was thought to require definitive legislative change to elements of the then-recently passed HTA because:

[T]he change from opt in to opt out for transplant purposes could risk undermining the 2004 act’s consent provisions, which safeguard the rights of individuals or their families to be asked if tissue can be used for a variety of other purposes. Continue reading

In Depth: Presuming Consent in Organ Donation, Parte the Firste

20 Nov
 
This is the first part of some rambling considerations about presumed consent, which takes off from the recently popularised Welsh initiative. I’m not going to make much reference to the question of elective ventilation, because while it is a related question in many ways, I consider it to be all rather tied up with death. Death, obviously, is a big part of organ donation; but  in and of itself I’d rather consider it more fully elsewhere. Nathan Emmerich, however, has written a paper on elective ventilation and death and their tie to organ donation, and it’s rather interesting stuff if you’re of a mind. 
 

One of the most internationally recognisable issues in modern biomedical law is the question of organ procurement. No state can claim to have available a surfeit of transplantable organs, and all too often you see a shortfall which results in tragic loss of life. One widely-touted solution to this issue is that of presumed consent- a policy gaining support in many of the nations who do not yet practice it.

In developed nations, and those in which modern medical technology is becoming more widespread, organ shortfall can only become worse as time progresses. Patients in need of transplantation can increasingly be kept alive by techniques such as dialysis, cardiopulmonary bypass, or the use of other extracorporeal devices; but these are hardly permanent solutions. For the patient to leave hospital and regain an increased quality of life, it is necessary for a suitable donor organ to be available and a successful transplantation to take place. Even where this is possible, organs are frequently lost through various forms of immunological rejection or failure, both acute and chronic in nature. For instance, UK statistics published by the National Health Service’s Blood and Transplant Authority (NHSBT) currently hold that 16% of cardiological transplants fail within one year of surgery.

Where they survive, these patients return to the waiting list of hundreds who require an organ, and the supply is effectively reduced for no gain. Continue reading

In depth: The rational patient

31 Oct

If we are autonomous as people, then it follows that we’re going to make what we consider to be ‘good decisions’. We’re going to make those about our daily lives, our actions, and our healthcare. But does a good decision always have to be a rational one?

If you can’t illustrate a concept visually, use a monkey.

A good decision is the making of a value judgement- the Oxford English Dictionary defines a value judgement to be “an assessment of something as good or bad in terms of one’s standards or priorities”. It stands to reason that the inherent goodness of something can only be judged subjectively, reliant upon what the evaluator considers goodness to be. I would posit that any collective or societal understanding of goodness must be based in generally accepted social mores and principles of behaviour (yeah, it’s one of those posts). For instance, in a medical and health science environment I think I’m safe in suggesting that it would be considered ‘good’, or at least desirable, to follow the principle of beneficence and to work in favour of restoring or improving a patient’s health (unless it has been determined that this is contra to the patient’s best interests, but that’s a  very different discussion). However, where you are making a decision for yourself, the subjective nature of goodness dictates that you can only make a truly good decision within your own self-perceived parameters- which is where the concept of rationality becomes vitally important to the equation. Continue reading

Does dignity matter in biotech?

25 Oct
In discussing emerging biotechnologies, the term ‘dignity’ is often thrown out as a blanket defence of bioconservatism. Proponents of technologies are questioning whether this is really relevant. But what IS dignity, and does it even matter?

The idea that human dignity is an empty concept is not a new one. It has been suggested in academic works throughout the best part of the last two centuries that the use of the term is often nothing more than what Marx termed a “refuge (from history) in morality”. In 1837, Schopenhauer set precedent for this attitude in his analysis of Kant’s ‘Grounding for the Metaphysics of Morals’, wherein he described human dignity as the

Almost as widespread as his rad hair.

” …shibboleth of all perplexed and empty-headed moralists. For behind that imposing formula they concealed their lack, not to say, of a real ethical basis, but of any basis at all which was possessed of an intelligible meaning…”

-from the tone of which we can perhaps infer that Schopenhauer, at least, saw how widespread and wide-ranging the term had become even then.

This is not to say, however, that merely because a view has been held by our intellectual forebears it must be so. I would argue that there are other moral concepts which we respect despite their being used conflicting rhetoric, ‘freedom’ being the most obvious, if slightly trite, example. Consider that while it would be generally agreed upon (in the West) to support the principle of freedom in terms of political agency, this freedom can be interpreted differently- for example, positive versus negative liberty. Regardless of your interpretation, having respect for this freedom is regarded as a solid, defined concept and a key feature in democracy.

The concept of respect for human dignity is different, and this is best illustrated by Schopenhauer’s assertion that the subject ‘…lack[s]… intelligible meaning…”.

So can we really respect a concept without a universally agreed definition? Academics of far greater provenance than I have attempted to work out of what might constitute human dignity, and many thousands of pages have been published in argument. That this debate continues is indicative of the scale of the difficulty that exists in validating the term, and it is worthy of note that possibly the most important- in that it was designed to guide future U.S. policy– review of the term, by the President’s Council on Bioethics in 2008, concluded that “…there is no universal agreement on the meaning of the term human dignity.” I’m not, therefore, going to try and give a definition myself; but it is of value to note that this meaning has gone from something defined and rather narrow in scope to Marx’s all encompassing moral shield, and to an undefined phrase at the core of various legislative documents today. Continue reading

In Depth: Are we obliged to learn genetic information about ourselves?

4 Oct

A brief note of apology- I simply can’t get the superscript and reference links to appear on-site, even with the correct html. Until we come up with a solution in the Biojammer labs, I’m afraid it’s gotta be the old fashioned way.
 
 

The idea that there is a right to refuse to know relevant genetic information about ourselves is one which appears to be broadly recognised in law. The Council of Europe’s Oviedo Convention states that:

“Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed.”1

However, I would question whether this is consistent with the principle of autonomy. Given the growing relevance of the field, let’s focus on the idea of genetic information in predictive medicine.

First off, we’re going to need to explore what the concepts at hand actually mean in context.

Continue reading