I have always had an interest in the ethics behind scientific research, in particular the discussions around using human tissues in research. However, the case study of the Alder Hey Organs Scandal was mentioned in the law and ethics lecture and I had never heard of anything like it. It certainly piqued my interest as retaining children’s organs without consent or permission seemed such a baffling concept to me.

An ethical minefield

Alder Hey is an NHS hospital in Liverpool that was the centre of a scandal when in 1999 it came to light that during post-mortem investigations of children between 1988 and 1995¹, the pathologists were retaining the organs of the deceased children without the knowledge or consent of their parents². This blatant “harvesting” of organs reminded me of a book I read recently entitled “Never Let Me Go” by Kazuo Ishiguro. To summarise, the book is the story of 3 children who grow up and realise they are clones of members of the public, and their role is to “donate” their organs until they eventually pass away. I found the dystopian science fiction nature of the book incredibly fascinating, and it shocked me how events that are eerily similar to those in the book have actually happened in most people’s lifetimes.

Why were the organs retained?

After the lecture I wanted to find out more about how activities that could well be described as “dystopian” managed to occur, bypassing the consciences of those involved. I initially assumed that the organs had been used for donations to children that needed transplants, but after thinking more about it whilst doing my research I realised that the organs would not be of use by the time the post-mortem occurred. Then why were the organs taken? Upon reading some journal articles from the years following the scandal I found out that many of the organs were not histologically examined, or used for educational and research purposes.

The reason the organs were retained (even for no apparent purpose) lies in the vague wording of the Human Tissue Act 1961 in which pathologists could retain tissues if there was a lack of objection, rather than informed consent. Therefore, by not informing the parents of the children about the reality of post-mortem procedures, there was a lack of objection and thus the ability to retain the tissues¹. However, this cannot justify the utter devastation experienced by the parents of these children, who already had experienced the awful loss of a child, as they came to the realisation that their child had been incompletely buried.

Additionally, I researched more about Dr Van Velzen, who was mentioned in many of the papers I read. I discovered that he was a pathologist who was struck off the General Medical Council for storing over 1000 organs from 850 children in jars in a dirty cellar as they slowly decomposed³. This is a particularly uncomfortable revelation as it is practically impossible to justify the decisions made by Dr Van Velzen.

Moving forwards

I found researching this case further incredibly insightful because I was unaware of anything like this happening in the recent past, and there was so much to find out. Cases like the Alder Hey Scandal have a huge importance in future scientific ethics discussions to ensure history does not repeat itself. The scandal led to the Human Tissue Act 2004, which clearly outlines the need for explicit consent for retention of tissues for research or other reasons.

Reference List:

1. Burton, J. L and Wells, M., (2002). The Alder Hey affair. In: Archives of Disease in Childhood (86/1). London: BMJ. pp. 4-7. DOI: https://doi.org/10.1136/adc.86.1.4
2. Bauchner, H. and Vinci, R., (2001). What have we learnt form the Alder Hey affair? In: British Medical Journal (322/7282). London: BMJ. pp. 309-310. DOI: https://doi.org/10.1136%2Fbmj.322.7282.309
3. Dyer, O., (2005). Alder Hey pathologist is struck off medical register. In: British Medical Journal (330/7506). London: BMJ. p. 1464. DOI: https://doi.org/10.1136%2Fbmj.330.7506.1464-a

Before I begin this blog on philosophical arguments and medical consents, it should be noted that there usually is no “real” definitive ethical answer to an argument as I follow JS Mill’s view that knowledge is not infallible, and that All sides contain plausible explanations. Truth, lies, or partially true, should be brought together in discussion (JS Mill, On Liberty).

Case analysis

In the paper by Murray (1990), the author stated many legal cases through out the history, providing evidence in how the medical consent was progressed. From the legal cases provided, in general, it can be observed that utilitarianism and deontology were combined. Although mainly, in the cases where informed consent was present, patient-centred deontological view is followed, and that the surgeons will respect patients’ individual liberty, and one’s right to one’s body. Some examples containing the theoretical traits are:

• Luka v Lowrie, 136 N. W. 1106, Michigan 1912: A child, who experienced a crash injury to his foot, was deemed by the surgeons that amputation was necessary. Normally, a child would not be considered to have competence for consent, therefore the parents should grant consent to the surgery. However, the parents were unavailable for discussion during the duration of the surgery. Without consent, the surgeon, after consulting with several physicians, performed the amputation. From this case, it can be justified based on act utilitarianism, where the goal of an action should be to achieve the maximum amount of happiness. Had the surgeon acted in a strong deontological view, and that the surgeon absolutely respects individual liberty and consent, the child’s situation may have turned another way.

• In re Melideo, 390 N. Y. S. 2d 523, New York, 1976: Mrs. Melideo received a dilatation and curettage of the uterus for diagnostic purposes. The patient developed significant bleeding soon after. The patient however, refused blood transfusions based on her religious belief. The court ultimately ruled that blood transfusion should and was not ordered to the patient, since the patient has consent competency. This follows the patient centred deontological view, where certain rules are unethical to be broken no matter the circumstances, and the patient has the ultimate right. Interestingly, in this case, there are two layers of deontological reasoning present. The first layer exists in the surgeons who acts as the “agents”. The surgeons respected the rule for a patients’ liberty based on the patient centred deontology, and the patient followed the basic deontology view where the decisions should never break certain rules laid upon oneself.

The two cases above represented how the two views can be at play at the same time instead of counter arguing. The deontological approach respects one’s autonomy and liberty, while the utilitarianism view fulfils certain situations where emergency consents are needed. Murray confirmed this in one of the conditions for emergency consent: the proposed treatment is for the ultimate benefit of the patient.

One possible reasoning for this might be the importance of liberty from both viewpoints. In an action-based context, such as the world-famous trolly cart problem, where 5 people will die if you don’t push the lever, and 1 person will if you do, the deontologist will not push the lever, only if the person has a doctrine to never kill in their mind. The utilitarian will push the lever for the maximum amount of happiness. This may make the utilitarianism seem like a violation of some individual liberties in some cases.

However, in the context for information, Mill argues that even though some truth may result in harms, they should still not be suppressed. The reason for this is that Mill follows the empiricism of knowledge, that knowledge can only be gained by experience, and that future knowledge (or truth) cannot be known. Therefore, suppressing the truth will assume its infallibility, which contradicts to Mill’s empiricism. This also supports the importance of information transparency to the patients so construct patients’ well-rounded judgement toward the procedure.

Free will and Determinism

Cobbs v. Grant, 502 P2d 1 California, 1972. In this legal case, it was mentioned by the author about the disclosure of risks:

This leads to another philosophical debate on free will and determinism. From the determinism point of view, Paul Ree is an example, that he holds a hard deterministic view. Ree believes that every decision was made from past events, and that an association of causation is present. Ree also argues that free will is an illusion since the causes are internal. For example, when a rock was thrown, the causation was observable, and it is external. Those events can be replicated and proven, given the exact force applied and other factors such as wind speed. To say that the rock has free will would not be plausible. From this logic, internal factors such as body chemistries or past experiences leads to determined behaviours of a person or an organism. Ree gave the example of a donkey between two of the same haystacks. If the donkey was observed to turn left and eats the left haystack, externally, it would seem like the donkey has free will, but what about hidden factors? The wind may be blowing towards the donkey from the left side, or a hidden body behaviour gathered from past experiences. Therefore, since some factors were internal and unobservable, and created the illusion. Ree believes that if the exact past causation, both internal and external were recreated to the exact same extent, the donkey would still choose to turn left. Same as when a person makes certain decisions.

While not many philosophers support purely on free will, many of them believes that free will and determinism can exist at the same time (Compatibilism). Compatibilists argue that if only causal determinism exists, there won’t be any needs for moral responsibilities. Since determinism argue that only one path was available to the person, and that person must act in that way. Therefore, there isn’t a responsibility for that person’s action. To apply moral responsibilities then, free will will be required. For compatibilism, theories vary. But Fischer’s (1994) theory can provide a supporting ground for information transparency in medical consent. Fischer provides an element called regulative control which is a control agent that can bring and refrain one from doing certain behaviours. As a result, different paths open for one to choose at that exact moment. For medical consent, the importance for surgeons to provide patients a clear view of the procedure surfaces. Therefore, the compatibilist view justifies the need for risk disclosure that it provides the patients a clear, rational judgement when they are competent for consent.

From the example and arguments above, medical consent is constructed on the foundation of individual liberty. While it can be fitted into many different philosophical debates. For novel medical research, personally I would argue for the respect of liberty and autonomy, and transparent communications for patients to create rational and justified decision. Yet, certain context may prove otherwise and incite debates.