Recently, the English organ donation law has changed to an opt-out system on 20th May 2020. This means that all adults are automatically presumed to consent to be a registered organ donor unless they choose to state otherwise, and they do not wish to donate. However, there are excluded groups, where the opt out system does not apply to them. These groups include those under the age of 18 and people who do not have the intellectual capacity to understand the new arrangements, and therefore are not deemed to have the capability of making personal decisions. Visitors to England, those not living here voluntarily and people who have lived in England for less than 12 months before their death are also excluded from the opt out system. This means that these groups are protected, as they are seen as unable to give consent to donate their organs, in the first place.
The system was changed in order to reduce the shortage of organ donors, which subsequently improves and saves more lives. The UK active transplant waiting list is increasing by about 8% a year, and the ageing population and increasing incidence of type 2 diabetes are likely to increase the shortage of available organs. There were 13.2 dead organ donors per million population in the UK in 2007, substantially lower than in several other European countries and especially Spain, which had a rate of 34.3 per million population for the same year.
However, the NHS has unequivocally stated that people's faiths, culture and beliefs will continue to be respected, meaning they are not coercing anyone to become an organ donor, which coincides with the medical ethics of the NHS. In this dissertation I am aiming to identify why people are opposed to organ donation, the benefits of organ donation, and explore the ethics behind organ donation. I am doing this topic as I wish to study Medicine at university, and I believe that educating myself about this controversial topic will broaden my understanding of the healthcare system in the UK, and how important medical ethics is.
As for the majority of the population in the UK, around 90% of the UK public are found to support organ donation, however, before this law was passed, just 40% had registered to become an organ donor. I believe this is due to forgetfulness and people being careless. Therefore, this system reduces the gap between the public's intentions to donate and inaction.
How ethical is the new opt-out system?
Consent is an active process in which permission is given by a patient to for a procedure to be carried out on their body. The principle of consent is an important part of medical ethics and international human rights law. However, this idea of ‘presumed consent’ could be seen by some people as unethical, and they may feel as if they are being forced to donate. Members of the Ethical Working Group felt that promoting, educating and encouraging people to donate was very important, and, morally, the correct approach to organ donation. However, they believed ultimately that organ donation was a personal choice, and it was an individual's final decision.
Organ donation is seen as a gift, and many people are uncomfortable with the idea of the country and the government already in possession of their organs before their death. The NHS can appreciate that organ donation is a difficult conversation for some, as people do not want to think about their death. Furthermore, many people in the UK live in poverty, with many who do not have direct access to the news because they are not as exposed to it, due to lack of technology, may not be aware that this law has passed, or they may have not received any education about why it is important to donate organs. The UK government and the NHS should take this into account, and make an effort to educate those who live in deprived areas.
The Legal Working Group stated that having a register in which people could record their decision to opt in or out during their lifetime, without involving families at the time of death may not be in congruence with the European Convention on Human Rights (ECHR). This is because in an opt out system, organs are taken from those who had not registered themselves exempt from the system as a consequence due to being forgetful and disorganised, or they may have learning difficulties or other problems with communication, as there are many immigrants and those from BAME communities in the UK who speak broken English, so they are very much disadvantaged.
Why are people opposed to organ donation?
Reasons against organ donation vary a lot depending on the individual. For some there are religious reasons against organ donation, while for others their family beliefs may contradict an intention to be a donor. In some religions for instance it may be believed that organ donation could affect you in the afterlife. Furthermore, a study in the US has shown that race is a contributing factor to the reluctance of organ donation, as historically, African Americans and other minorities donate organs at a much lower rate than white people. Past studies have shown that this is because of lack of education and awareness, distrust in the healthcare system, racism and lack of access to medical care. Their distrust in the healthcare system was due to their inhumane treatment in the past, including the Tuskegee Syphilis Experiment, in which 600 black men were involved. 399 of them had been diagnosed with syphilis and the rest were deemed to not have the disease. The Public Health Service wanted to study the effects of untreated syphilis at the time, however the participants were told that they would be offered free medical examinations, free hot meals as well as burial insurance. The men were not told they had syphilis, instead they were told that they were being treated for having âbad bloodâ, which was a common term at the time that referred to a variety of health problems, like fatigue and anaemia. They were not given counselling on avoiding spread of the disease, and not given treatment throughout the course of the study.
Even when penicillin, a common antibiotic to treat illnesses caused by bacteria, was discovered in 1947, the patients were not offered it. The study became the longest (1932-1972) nontherapeutic experiment on humans in the history of medicine, and has come to represent not only the exploitation of black people in medical history, but the potential for exploitation of any population that may be vulnerable because of race, ethnicity, gender, disability, age or social class.
Since the experiment ended only around 50 years ago, the distrust in the medical system is justifiable, as the lack of informed consent is completely unethical. People of minority backgrounds may feel that the healthcare system does not have their best interests, therefore they are sceptical in order to protect themselves. However, this is actually a disadvantage to BAME communities, as for many patients in need of a transplant, the best match will come from a donor of the same ethnic background. For certain transplants to take place, such as a kidney transplant, the donor and the recipient must have matching blood types and tissue types, and those from the same ethnic background are more likely to have these criteria. Therefore, this actively demonstrates that black, Asian and minority ethnic patients have to wait significantly longer for a transplant than their white counterparts due to the shortage.
Why is the opt out system so important
There are currently around 6000 people on the UK Transplant Waiting List, and last year over 350 people died while waiting for a transplant. A shortage of organs not only takes more lives, but also increases the likelihood of UK citizens purchasing organs from the black market as people become more desperate to save their own or their loved one's lives and there is no other option. This subsequently makes more organ trafficking victims. The commercial trade of all organs is illegal in the UK, as it is seen as unethical as there is no consent from the recipient, as the victims experience illegitimate means of force, threat, or other forms of coercion such as kidnap, deception, and fraud.
Should Prisoners be organ donors?
In the UK, living donation from prisoners has only been considered in exceptional circumstances, and between family members when there are no other living donors suitable for the recipient. However, prisoners are not excluded from the opt out system like those who are under 18 or those who are deemed to not have the mental capacity to understand. However, a prisoner could be viewed as someone who is incapable of making a free standing decision.
In the United States, there is a debate discussing the acceptance of prisoners as altruistic organ donors, to amend the issue of organ donation shortages. Lawrence Gostin, an American law professor who specialises in public health law, stated that, ‘Prisoners’ lives are determined almost completely by their keepers, and they will do almost anything to make their lives better, in the hopes of less isolation, better conditions and even parole. Despite rules that organ donations should not affect prisoner conditions, they will believe otherwise. Free consent is not truly possible under coercive conditions.
This therefore brings up an ethical issue, as Gostin is suggesting that prisoners cannot consent due to their vulnerable position, and that donating their organs is a method of exploiting them. However, it is perfectly realistic to assume that there will be some prisoners who are eager to donate their organs, and do not expect better conditions or parole in return for their actions.
However, since the living conditions inside prisons are poor and unsanitary, diseases are likely to spread between inmates. Hepatitis C and HIV are known for spreading in prisons, as they are highly contagious diseases, making a lot of inmates unable to donate their organs. Due to lack of medical exposure, there will be many prisoners who have not been diagnosed with any disease but are still carriers or asymptomatic. This raises a significant concern, therefore it is a valid argument to support that prisoners should not donate.