Ethical Considerations

Early diagnosis is associated with ethical dilemmas for patients and healthcare in terms of emotional response and interventions. The response to early diagnosis depends mainly on the perceived seriousness of the disorder and on the effectiveness and availability of treatment. Early diagnosis of a curable tumour is therefore less likely to have adverse psychological effects compared to the diagnosis of a late emerging outosomal dominant disorder, like Huntington’s disease in a patient who already had offspring. Patients are faced with the prospect of knowing the likely cause of their death if the disease is terminal, like AD. Patients given this advanced warning may react by changing their lives to reflect neglected values such as relationships and desired experiences and this can often lead to a renewed appreciation of the world.

For other people it may be socially stigmatising and detrimental to their self-image. It can also have serious consequences for employment and financial matters such as investments and insurance. The impact on patients will also depend on the life stage in which they find themselves. Old age and retirement are associated with lower health expectations and poorer outcomes but younger patients usually have more dependents, and higher health and personal expectations.

Advances in healthcare are at present moving steadily in the direction of early diagnosis and intervention on the back of advances in genetics. This may in time lead to changing public perceptions of what normal means. As I indicated in Section 1.3, for humans being ill appears to be the norm, whilst what is considered a disease or disorder depends on cultural as well as scientific values.

The main concerns from critics of AMCI and AD centre on the ethics of making a diagnosis of AD or prodromal AD when it is occasionally incorrect and at present invariably incurable and poorly responsive to treatment. The ethics

concerning a diagnosis of MCI, the more heterogeneous condition, has been considered in some detail and I will summarise the main issues that also apply to AMCI (Werner and Korczyn, 2008). Revealing a diagnosis relieves anxiety about symptoms by putting a label on them and allows patients to be involved in decision-making regarding their future. Concerns about disclosing a diagnosis include precipitating fear, distress and depression, and reducing hope and positive thinking.

However, available findings do not support this in AD and it has not been studied conclusively in MCI. The situation in MCI is more complex due to uncertainty concerning the prognosis, as not all cases will progress. The authors stress that this point is particularly valid in sites where there are fewer experts knowledgeable about the complexities of the diagnosis of MCI. This point is not unique to MCI and pooling

expertise and using combinations of measures that improve sensitivity and specificity, as implemented in our memory clinic, are reliable methods for increasing diagnostic accuracy that reduce the ethical dilemmas associated with inaccurate diagnosis. The emergence of AMCI as a more specific prodromal stage for AD and the available evidence supporting its validity should resolve some of the dilemmas associated with MCI. The level of stigma associated with MCI or AMCI is not certain yet and it will likely be influenced by the effectiveness and availability of treatment, and by the possibility of restrictions imposed on certain high-risk activities such as driving.

In our memory clinic we deal with some of these ethical dilemmas by asking patients and their families if they want to know the outcome of the assessment.

Patients unaware of their diagnosis can be managed as such in clinical settings.

However, it is difficult to recruit such patients into research studies with potential adverse effects that must be explained so that informed consent can be obtained. It is rare in our clinic sample that patients prefer not to know their diagnosis and all the potential participants we approached knew their diagnosis.

Research on patients with cognitive impairment requires additional

consideration and care in terms of obtaining informed consent. The AMCI group in particular could have trouble in retaining information on which to base a decision.

Approval for the study was obtained from the West Essex Local Research Ethics Committee and all participants provided written informed consent. In obtaining consent, we allowed sufficient time for participants to digest and discuss the proposed studies with relatives and took care to simplify and repeat information.

We thought that the extended travel involved in attending the scanning facility as well as noise from the scanner would be the most taxing aspects. Reports from participants confirmed that the procedures were noise but travel was not mentioned as

a problem. During the scanning sessions participants were familiarised with the environment before functional scanning commenced, they also had constant access to an emergency call button.

The move towards earlier diagnosis assisted by advances in biotechnology is gathering pace. This will present us with new ethical dilemmas related to diagnostic disclosure, treatment and research participation, with advances in ethics more likely to follow technical advances. We are therefore left with the general principals of ethics to guide us.