Adults with Incapacity Amendment Act: consultation
Allowing adults with incapacity to participate in a wider range of research studies
As of now, Adults with Incapacity legislation only allows incapacitated adults to participate in research that cannot be carried out on an adult possessing capacity, and where the research in question aims to obtain knowledge about the ‘causes, diagnosis, treatment or care of the adult’s incapacity; or the effect of any treatment or care given during their incapacity to the adult which relates to that incapacity’.
This essentially means that adults with incapacity cannot participate in research relating to conditions they may experience that are not linked to their incapacity; or indeed research of any other nature. One major consequence of this is that it may result in the exclusion of incapacitated adults from certain research studies, which in turn may risk research outcomes not catering to the needs of these individuals.
Thus, these proposals put forward the idea of opening up research opportunities for adults with incapacity; provided the same robust safeguards and checks are in place to ensure their well-being and rights.
The first of these questions (Proposal 97) asks whether adults with incapacity should be able to participate in research investigating conditions that may arise as a consequence of their incapacity. For example, with individuals with dementia more prone to falling, this would make it clear that incapacitated adults with dementia can partake in hip fracture studies, which a strict reading of the current Act may preclude.
The second question (Proposal 98) asks whether adults with incapacity should be able to participate in research investigating conditions that they experience, but that do not relate to their incapacity. For example, adults with incapacity who have a chronic condition that occurred prior to a separate condition that caused their incapacity would now be able to participate in research that investigates either of these conditions.
The third question (Proposal 99) asks if adults with incapacity should be able to participate in any research; regardless of whether the research explores conditions that relate to their incapacity or any other condition they may experience.
Related information to Questions 97, 98 and 99
Question 97
In addition to being permitted to participate in research that investigates the cause, diagnosis, treatment or care of their incapacity, should the AWI Act be amended to allow adults lacking capacity to participate in research that investigates conditions that may arise as a consequence of their incapacity?
Unlike the above example that highlighted potential injuries or conditions that may arise as a consequence of an individual’s incapacity, there are also cases where some individuals may experience a medical condition that is completely unrelated to their incapacity. For example, some people may experience chronic conditions or illnesses before then developing a condition that may cause them to lose capacity. In these instances, under the current Act, such individuals may not be permitted to participate in research that investigates the original chronic condition they started to experience before they developed a separate condition that resulted in their loss of capacity. One proposal to resolve this would be to amend the AWI Act to allow adults with incapacity to participate in research studies that investigate any condition they may experience – regardless of whether it relates to their incapacity or not.
Question 98
In addition to being permitted to participate in research that investigates the cause, diagnosis, treatment or care of their incapacity, should the AWI Act be amended to allow adults lacking capacity to partake in research that investigates conditions they experience that do not relate to their incapacity?
Research should lead to novel care and treatment regimens that are widely applicable across the population. Developing processes where a wider range of people, including adults with incapacity, can participate in research is likely to make the outcomes of such studies more robust and applicable to the population as a whole. In addition, by excluding adults with incapacity from participating in certain types of research, we may risk research outcomes not catering to the needs of these individuals. For example, whilst people may not currently experience a particular condition, they could be at risk of developing that condition in the future as a result of their genetic predisposition, their age, or other pre-existing conditions they experience.
In situations such as this, it is important to understand how people at risk of developing a particular condition can take steps to reduce their chances of developing that condition. By allowing adults with incapacity to participate in research studies that may explore conditions that they do not personally experience, this opens up the possibility for adults with incapacity to participate in preventative research studies for conditions they could be at an elevated risk of developing. This in turn could improve our understanding of the progression of these conditions and help provide insights into the steps that adults with incapacity can take to help reduce their chances of developing conditions in the future.
To summarise, a further possibility would be to amend the AWI Act to allow adults with incapacity to participate in any type of research; provided that the same stringent safeguards and checks are applied to ensure the wellbeing and rights of these individuals:
Question 99
Should the AWI Act be amended to allow adults with incapacity the opportunity to participate in any research; regardless of whether the research explores conditions that relate to their incapacity or investigates conditions that they experience themselves?