Introduction:
The problem, around illegal kidney transplants, is not new. Nor are the many questions raised around the ethical and moral responsibilities of medical practitioners. It is true that being a medical practitioner a person holds a high level of responsibility, as they are working directly with the lives of people, even the smallest mishaps can have drastic results. But at the same time, they have to work under strenuous and high-pressure conditions, under which getting full and direct consent of an individual may not be possible all the time. It is relatively uncommon for legislations to interfere in this field, but because of the many controversies which revolve around the use of human tissue and/or organs to be used after death for transplantation and for the purpose of medical education and research, the involvement of legal control seemed to be imperative.
Therefore, because of these issues, many debates around the consent of organ retention arose and questions of involvement of the legislation into this field also gained traction.
Alder Hay Scandal and Aftermath
One such major event which not only on a national level but on an international level stated the talks around organ retention. This was the Alder Hey scandal of U.K. many of these. In this scandal, 1999 it emerged that various whole organs, including hearts and brains, had been removed at necropsy from children’s bodies at the Alder Hey Hospital. Initially, as per the Bristol enquiry, claims were made by the officials of the hospital that these retentions were not unordinary and were kept for research and teaching purposes. Afterwards, when inquiries were made by the parents, it was found that not only organs, but tissues and whole foetuses were being kept in the hospital’s basement, and the amount rose up to 2080 retainments. With more enquiry, it was found that not only was their retentions, but most foetuses were obtained due to miscarriages, stillbirth and non-consented abortions.
At this stage, the parents were furious as this was done without their knowledge and consent. The parents buried their children’s bodies without the organs.
After the enquiry into this scandal, many questions regarding the socio-cultural ethics arose, including the aspect of consent. But many questions around the involvement of the legislation into the regulation of organ retention, transplantation, etc also arose. Questions like, should the law interfere in medical practice within this area or whether statutory intervention is required. Therefore, in this article, we will mainly deal with the issues that arise due to the involvement of legislation into the field of organ retention and transplantation. Further, certain ways how laws can be improved and this problem can be tackled.[1]
Laws and Regulations Regarding Organ Retention
India
In India, we have laws regulating the transplantation of organs. The Transplantation of Human Organs and Tissues Act, 1994, is the regulatory statutory body. Only the registered hospitals are allowed to do such procedures and state authorities are to regulate the applications.[2]
UK
After 40 years of intensive research was the Human Tissue Act 1961 enacted. This act was related to the removal of organs/tissues from cadavers for medical purposes, such as transplantation, research and education. And for the purpose of post-mortem removal, no provisions regarding consent were mentioned.
The Human Tissue Act, 2004, was enacted after the various enquiries, after the Alder Hey scandal, were made. This act made changes regarding obtaining the consent of the next in kin. The language changed from “no objections” to “appropriate consent”. Appropriate consent in case of children became the consent obtained before the death, from a person who had direct parental responsibility or someone in a qualifying relationship.
Controversies that Revolve Around the Legislation
When it comes to regulating organ retention various controversies also arise. Whether having such laws would help or not or if it would, then how should these laws be framed to provide maximum efficiency.
Some of these controversies follow the following themes:
Social Perspective
From a social perspective, it is crucial to regulate so as to control the powers that the medical officials hold. As in the case of Alder Hey scandal, we’ve seen that without proper regulation, it could result in a breach of proper consent, an assault on grief and memory, as well as a contravention of religious belief and funerary custom.[3]
Organ trade in India like other problems such as child labour and prostitution has a societal issue to it. It relates to the exploitation of the poverty-stricken people by alluring them with financial gains that at times can be large and can meet their immediate short-term financial needs. Unlike other similar exploitative social situations, organ donation requires an invasive surgical procedure that has both physical and psychological implications.[4]
Medical Practitioners / Pathologists Perspective
From the point of view of the medical professional, the cadaver is used as a form of redemptive force in medicine, in terms of organ donation, medical research and medical education and training.
The main reasoning used by the doctors in the alder hey hospital was that this was being done for educational and research purposes, mostly unused retention and was well within the limit followed by other hospitals. But this was found to be grossly wrong.
One of the reasoning behind this could be carelessness or negligence, but it is often the case that medical practitioners are not aware of the laws. Lack of concern about, or awareness of, the law and/or professional guidelines may well have been a major contributor to the eventual suffering caused to families which were exposed in these Inquiries. Even the most basic rules as to which deaths required to be reported to the Coroner seem to have been poorly understood by the involved doctors at Alder Hey Hospital. [5]
Adequate training in the law, therefore, forms an important part of the recommendations of these Inquiries.
Legal Perspective
As for the legislatures, it becomes important to keep in mind as to what and how much is being regulated. A proper balance needs to be achieved. For e.g., in the above case, the Human Tissue Act of 1964, was found to be inadequate in terms of the provisions regarding consent. Consent being the vital element of these procedures, thus having inadequate provisions can lead to massive injustices in the society.
At the same time, such legislation must provide for enough freedom, so as to not hamper the research and the redemption techniques in the medical field. This is because this is not just a professional field, but also a necessity in life.
Suggestions
In India and in most states all around the world, the problems of illegal organ donations are very much prevalent as discussed above. Now let us focus on certain aspects wherein we can make changes as effectively as possible.
India has had the THO Act for a long enough amount of time, but we still see events of illegal kidney transplants all over media. It would be fair to say that the existing laws are either not enough or are being misused. One way our law is being misused the most is due to the provision of ‘affection of a relative’ which has led many people to gain sudden affection for a patient in return of money. Thus, it would be more effective if the focus is put more on regulating the procedure and securing a safe environment for donors, rather than limiting who can and who cannot donate.[6] Paid organ donation has done through a legal means would also be a lot more effective.[7]
Putting more effort into making the consent aspect of donation a lot stricter would definitely bring more credibility.
Further, thrust on efficiently implementing these laws through legal means would be not only better for the patient but also for the donor who might have just been donating for money. In a developing economy like India’s, with high poverty rates, securing the interest of the poor becomes very crucial.
Therefore, effective changes in laws and efficient implementation of those laws would make this field a lot more transparent, and reduced illegal activities, where no one is being used.
A definite change needs to happen on the part of the medical professionals, where they need to be made aware of the laws and be taught how to deal with the relatives in case of taking consent.
Lastly, more than restricting the medical field, our laws need to give them the right scope and way to do their research. Simply restricting what medical professionals can or cannot do does not help us as a society.
Conclusion
We as a society need to understand that organ donation helps medical science grow, with effective research and education. And as far as the redemption aspect goes everyone is aware of the wonders it can lead to.
Therefore, in a profession as noble as medical practice, we need to allow them the space to grow. Most importantly by equipping them with the right laws and methods, we need to make the space of organ donation a less capitalistic but a more socialistic place, where everyone can enjoy the benefits it offers without anyone getting hurt, whether physically or emotionally. We don’t simply need more laws and create a bureaucracy in the medical field. The field requires its own space to function smoothly as well as the people need to gain or regain their trust.[8]
References:
[1]Bauchner, H., & Vinci, R. (2001). What have we learnt from the Alder Hey affair? BMJ : British Medical Journal, 322(7282), 309–310. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119560/
[2] Shroff, S. (2009). Legal and ethical aspects of organ donation and transplantation. Indian Journal of Urology, 25(3), 348. https://doi.org/10.4103/0970-1591.56203
[3] Tomasini, F. (2017). Posthumous Harm in the History of Medicine. In www.ncbi.nlm.nih.gov. Palgrave Macmillan. https://www.ncbi.nlm.nih.gov/books/NBK464647/
[4] Shroff, S. (2009). Legal and ethical aspects of organ donation and transplantation. Indian Journal of Urology, 25(3), 348. https://doi.org/10.4103/0970-1591.56203
[5]McLEAN, S. A. M., CAMPBELL, A., GUTRIDGE, K., & HARPER, H. (2006). HUMAN TISSUE LEGISLATION AND MEDICAL PRACTICE: A BENEFIT OR A BURDEN? Medical Law International, 8(1), 1–21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2493386/
[6] Shroff, S. (2009). Legal and ethical aspects of organ donation and transplantation. Indian Journal of Urology, 25(3), 348. https://doi.org/10.4103/0970-1591.56203
[7] Cameron, J. S., & Hoffenberg, R. (1999). The ethics of organ transplantation reconsidered: Paid organ donation and the use of executed prisoners as donors11See Editorial, p. 733. Kidney International, 55(2), 724–732. https://doi.org/10.1046/j.1523-1755.1999.00286.x
[8] Mcguone, D., & Kay, E. W. (2004). The impact of the organ retention controversy on the practice of hospital necropsy: a four year audit. Journal of Clinical Pathology, 57(4), 448. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1770284/
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