How Default Bias in Opt-Out Organ Donation Legislation Undermines Consent
England and Wales have transitioned from opt-in to opt-out organ donation systems with Scotland soon to follow. Previously, donation only occurred if the deceased had registered their consent by signing up to the Organ Donor Register, whereas now a preference of non-donation must instead be registered. One distinct motivation to move to an opt-out system was that, although high proportions of people in the United Kingdom said that they would donate when asked, a large number failed to register. By changing the default to being a donor rather than not, the new legislation is part of several measures intended to increase donation rates.
In 2015, an opt-out policy came into effect in Wales. This policy, also known as “presumed” or “deemed” consent, was a type of “soft” opt-out. This approach means that any person, not exempt because of age, mental capacity, or being a non-resident, who passes away is deemed to have authorised donation of their organs. Opposed to “hard” opt-out where the individual’s family has no say, in the “soft” system their family is consulted and may intervene if they believe their wishes were otherwise. In 2019, England also introduced soft opt-out legislation through the Organ Donation (Deemed Consent) Act. Following suit, Scotland received Royal Assent for the Human Tissue (Authorisation) Bill in 2019, coming into effect March 2021.
Yet, there still exists discussion surrounding whether transitioning to opt-out legislation is an effective approach to increasing donation rates. Studies of multiple countries have suggested that the effectiveness of opt-out legislation on increasing donation rates has inconclusive results' identifying that a multitude of factors affect the outcome (including infrastructure, Gross Domestic Product, public awareness, etc). But, another important issue lies within whether it is right to use the law to influence decisions to give consent.
Behavioural science studies, in particular, “nudge theory”, have demonstrated that the presence of a default bias within policies has an influence upon the choice an individual makes. When given a decision, individuals are more likely to pick the option that is presented as a norm. This preference is suggested to be linked to trusting normative attitudes and generally viewing rules as being guidance to what is “right”. This bias is recognised and employed by medical policy-makers who set defaults to desired health behaviors. In practice, introducing a small barrier in front of an unhealthy or undesired behaviour requires input of additional effort and reduces the likelihood of that choice being picked (hence increasing the likelihood to choose a more convenient default option).
Manipulation of behavioural tendencies are common practice in many areas of healthcare and are known to be effective ways to encourage healthy behaviours or dissuade from unhealthy ones. For instance, tactics are employed to present flu jabs and vaccines as desirable such as making them convenient or default, or offering them along with other benefits. The option to opt-out of receiving jabs is made more difficult (as people must put more effort in order to register non-consent) which effectively increases the likelihood of individuals going through with the desired health choice. In these instances, the individual is autonomous but encouraged to see the option recommended in their best interest as more appealing.
Organ donation policymakers have implemented nudges with the intention of increasing the number of organs available for transplant. A study of European countries found those in opt-out countries were more likely to exhibit a willingness to donate not only their own organs but also to authorise donations of the organs of their relatives compared to those in opt-in countries. Therefore, it seems that their nudges are effective.
However, it is important to consider whether these changes in approach undermine consent. To use legislation to influence an individual’s behaviour is a type of libertarian paternalism, intended to promote behaviours in the best interests of individuals. Yet, it is worth examining whether a decision can be considered autonomous if the consenter has been nudged. After all, truly consensual decisions about healthcare are required by law to be entirely voluntary, adequately informed, and obtained within a neutral environment.
The voluntary aspect of consent is impacted when behavioural science is at play. The decision of consent or non-consent is not wholly made by the person since evidence shows it is influenced by the defaults presented in the options available. Therefore, the decision-making environment is not adequately neutral if one option is presented as the desired outcome.
Additionally, the best interests of a potential donor should be the ability to make the “right” decision with regard to their beliefs (religious or otherwise) about organ donation. The policymaker’s aim is to encourage behaviours that are not in that individual’s best interests but rather are in the interests of those in need of organ transplants. It seems the policymaker is valuing his goal of increasing donation rates above the requirement to retrieve wholly voluntary consent. The option desired by the policymaker may wrongly overlook reasons (such as religious) that a person may object, therefore nudging them towards a decision that is not in their best interest.
Even if it is considered within their best interests and the individual does not give consent to being a donor, then they should not be persuaded otherwise. It is an important medical principle, as stated within the Mental Capacity Act (2005), that a person should not be treated as unable to make a decision merely because they make an unwise or irrational choice.
For example, say a person was undecided about whether or not they would like to donate their organs after death. As it stands, current legislation nudges an individual to consent because the process is set up in such a way that it dissuades opting-out; individuals decide under a default bias and have to put additional effort in to register non-consent (compared to the consent which is “deemed”). This not ignores the best interests of individuals which may be non-donation but also undermines their ability to make an entirely voluntary decision from a neutral informed basis.
Overall, there is some place for behavioural science within policymaking. But, policymakers must use these tactics responsibly — they must be transparent about their intent with regards to where and how their intervention will work. They should not use it within decisions to give consent because to do so undermines the voluntary and neutral conditions which are vital to such a decision. An ideal environment for consensual decision making is one which has no default bias — a patient must register their decision to either opt-in or out, with no presumption either way. Meanwhile, to increase donation rates alternative measures that do not compromise what it means to consent should be prioritised (such as infrastructure, awareness, methods of approaching family members). After all, it is not proven an opt-in default increases rates of donation alone.